RE: NeuroSarcoid

[Guest guest]

It's so good to have you with us! Welcome! Health and peace to you! Jeannie macleen500 wrote: I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again.

I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

It's so good to have you with us! Welcome! Health and peace to you! Jeannie macleen500 wrote: I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again.

I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

It's so good to have you with us! Welcome! Health and peace to you! Jeannie macleen500 wrote: I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again.

I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

Welcome, sorry you have to deal with this disease, but this is a great

support group/family you will find here, full of a lot of valuable

knowledge.

Smiles,

Marla

NeuroSarcoid

I am new to this site. I have had Neurosarcoidosis for several years.

Can no longer work. Have now developed nodules in the pericardium.

Overall, I think I have done well compared to some of you whose messages I

have read. I have been on many meds and reacted to most of them so had to

settle for old basic medications. I was on large doses of prednisone for

years. I have had nonhealing neuropathic ulcers on my feet for the last 19

months now. I had my second surgery (Deep debridement with graft) on May

19th. So they have now decreased the prednisone. I am now non-weight bearing

again.

I had the first procedure done in January (the wound had been debrided in

the office and treated at a wound clinic for 13 months. Since January I have

had two bouts of Cellulitis in my leg, one requiring hospitalization.

However aside from this I have done OK except I have difficulty walking,of

course.

It is good to know you are out there. God Bless Each Of You.

macleen500

[Guest guest]

Welcome, sorry you have to deal with this disease, but this is a great

support group/family you will find here, full of a lot of valuable

knowledge.

Smiles,

Marla

NeuroSarcoid

I am new to this site. I have had Neurosarcoidosis for several years.

Can no longer work. Have now developed nodules in the pericardium.

Overall, I think I have done well compared to some of you whose messages I

have read. I have been on many meds and reacted to most of them so had to

settle for old basic medications. I was on large doses of prednisone for

years. I have had nonhealing neuropathic ulcers on my feet for the last 19

months now. I had my second surgery (Deep debridement with graft) on May

19th. So they have now decreased the prednisone. I am now non-weight bearing

again.

I had the first procedure done in January (the wound had been debrided in

the office and treated at a wound clinic for 13 months. Since January I have

had two bouts of Cellulitis in my leg, one requiring hospitalization.

However aside from this I have done OK except I have difficulty walking,of

course.

It is good to know you are out there. God Bless Each Of You.

macleen500

[Guest guest]

Welcome, sorry you have to deal with this disease, but this is a great

support group/family you will find here, full of a lot of valuable

knowledge.

Smiles,

Marla

NeuroSarcoid

I am new to this site. I have had Neurosarcoidosis for several years.

Can no longer work. Have now developed nodules in the pericardium.

Overall, I think I have done well compared to some of you whose messages I

have read. I have been on many meds and reacted to most of them so had to

settle for old basic medications. I was on large doses of prednisone for

years. I have had nonhealing neuropathic ulcers on my feet for the last 19

months now. I had my second surgery (Deep debridement with graft) on May

19th. So they have now decreased the prednisone. I am now non-weight bearing

again.

I had the first procedure done in January (the wound had been debrided in

the office and treated at a wound clinic for 13 months. Since January I have

had two bouts of Cellulitis in my leg, one requiring hospitalization.

However aside from this I have done OK except I have difficulty walking,of

course.

It is good to know you are out there. God Bless Each Of You.

macleen500

[Guest guest]

A big cheery welcome to you! Do you go by MacLeen? I hope that optimism is contagious, because I think you have a remarkable attitude. Do you mind giving us a little background on yourself? Married, kids, location? Are you diabetic, or are the ulcers the result of the sarc neuropathy? I'm interested, as I have severe peripheral neuropathy, getting worse. I'm probably diabetic too; will discuss lab results with my doctor next week.

This is a great place to ask questions, give & get support, share information, vent, rant, whatever you need. Sometimes we share feelings here that we don't feel free to share with our families & friends. Visit the Links section for some great & varied resources; also the Archives for past information. You can access them at the bottom of each message sent through the group. You can also check out the Photo section & see what some of the NS family look like, or even used to look like.

You may experience a lag in response time, as many of us are in varying stages of illness, recovering from treatment, etc. Again, welcome to the group. You seem to have much to offer us; don't hesitate to voice your opinion.

We don't always talk about rodents & hot tubs. But many of us find that some silliness relieves the anxiety & loneliness many experience. I hope that doesn't put you off. More later!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: NeuroSarcoidDate: Thu, 25 May 2006 06:07:50 -0000I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Macleen500, welcome to the group. You'll get lots of info here, get to rant and rave, or just let it all hang out and talk about whatever you need to talk about on any given day. Some of us are better on the medical info but we all try to support each other with whatever you are going through. Adjusting to this disease is hard as is issues with docs and insurance, etc. Family relationships are also covered and all that contains. again...welcome! S.macleen500 wrote: I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have

been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Macleen500, welcome to the group. You'll get lots of info here, get to rant and rave, or just let it all hang out and talk about whatever you need to talk about on any given day. Some of us are better on the medical info but we all try to support each other with whatever you are going through. Adjusting to this disease is hard as is issues with docs and insurance, etc. Family relationships are also covered and all that contains. again...welcome! S.macleen500 wrote: I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have

been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Macleen500, welcome to the group. You'll get lots of info here, get to rant and rave, or just let it all hang out and talk about whatever you need to talk about on any given day. Some of us are better on the medical info but we all try to support each other with whatever you are going through. Adjusting to this disease is hard as is issues with docs and insurance, etc. Family relationships are also covered and all that contains. again...welcome! S.macleen500 wrote: I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have

been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

I go by Eileen. I have been a nurse for forty years. Live in the good old USA. Married, three children, six grandchildren. All live close by. My doctors are very good to me. So I have a lot to be cheerful about. I had numbness and tingling for several years before I went to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor after my feet were totally numb almost to the knees and I was having pain. They started the workups then. I have an HMO and they have an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid but sent me to se a specialist in Chicago who said no and did a Spinal Tap and when the protein was very high he diagnosed me Chronic Inflammatory Demyelinating Polyradiculoneuropathy. They started out with some medication. I also had several scans and a total MRI of

my back. The MRI showed three cervical discs, two thoracic discs, and three lumbar discs were really messed up. (I had always told my students and co-workers that always used good body mechanics and if they followed my lead they would never have a back problem. So, then they gave me an injection into my cervical spine and wala! it helped with the pain. (that was back when the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion and lots of Hardware. Done in UIC by a team of specialists. Came out fine, came home, did well, went back to work and worked for a few hours. (I was the Director of Nursing) and started to sign my name to something and could not spell my name. Well, hadn't tried to do that since surgery. I still have (5 years later) have great difficulty spelling. Anyway the surgery didn't help. (Now I have a pain in the neck). I went through all the newest meds, plasmapheresis, etc. All the workups for latent cancers. My mother and her brother died of lung cancer so the people at Northwestern are sure that I have a hidden Lung Cancer somewhere. Then I was told that I had End Stage Diabetes by a Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have hypoglycemia That was the only time I really got angry. Finally after I got Sepsis from an infected central line when I was having plasmaphersis (At this point I was still working every day and having the procedure done three evenings a week taking vicodin like House on TV) The doctor would not let me go back to work. I agreed because something is affecting my memory. It is getting very bad, I am now on Namenda, if anyone else has that problem, it helps me. They biopsied the Sural nerve and a the Gastrocnemus muscle in the back of my leg and they were both positive for

sarcoid, so my doctor was right so many years ago. I use a Duragesic patch for pain with vicodin for breakthrough and my pain is controlled quite well that. I am not pain free but it isn't bad. I was on Neurontin also, but was recently switched to Lyrica. I do now have diabetes but not very bad, I attribute it to the prednisone. The wound is from the neuropathy. So, I have been on disability for 1 1/2 years now. I am sorry, you asked a simple question, ans I rambled. Eileen Rose wrote: A big cheery welcome to you! Do you go by MacLeen? I hope that optimism is contagious, because I think you have a remarkable attitude. Do you mind giving us a little

background on yourself? Married, kids, location? Are you diabetic, or are the ulcers the result of the sarc neuropathy? I'm interested, as I have severe peripheral neuropathy, getting worse. I'm probably diabetic too; will discuss lab results with my doctor next week. This is a great place to ask questions, give & get support, share information, vent, rant, whatever you need. Sometimes we share feelings here that we don't feel free to share with our families & friends. Visit the Links section for some great & varied resources; also the Archives for past information. You can access them at the bottom of each message sent through the group. You can also check out the Photo section & see what some of the NS family look like, or even used to look like. You may experience a lag in response time, as many of us are in varying stages of illness,

recovering from treatment, etc. Again, welcome to the group. You seem to have much to offer us; don't hesitate to voice your opinion. We don't always talk about rodents & hot tubs. But many of us find that some silliness relieves the anxiety & loneliness many experience. I hope that doesn't put you off. More later! Ramblin' Rose Moderator Reply-To:

Neurosarcoidosis To: Neurosarcoidosis Subject: NeuroSarcoidDate: Thu, 25 May 2006 06:07:50 -0000I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two

bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

I go by Eileen. I have been a nurse for forty years. Live in the good old USA. Married, three children, six grandchildren. All live close by. My doctors are very good to me. So I have a lot to be cheerful about. I had numbness and tingling for several years before I went to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor after my feet were totally numb almost to the knees and I was having pain. They started the workups then. I have an HMO and they have an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid but sent me to se a specialist in Chicago who said no and did a Spinal Tap and when the protein was very high he diagnosed me Chronic Inflammatory Demyelinating Polyradiculoneuropathy. They started out with some medication. I also had several scans and a total MRI of

my back. The MRI showed three cervical discs, two thoracic discs, and three lumbar discs were really messed up. (I had always told my students and co-workers that always used good body mechanics and if they followed my lead they would never have a back problem. So, then they gave me an injection into my cervical spine and wala! it helped with the pain. (that was back when the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion and lots of Hardware. Done in UIC by a team of specialists. Came out fine, came home, did well, went back to work and worked for a few hours. (I was the Director of Nursing) and started to sign my name to something and could not spell my name. Well, hadn't tried to do that since surgery. I still have (5 years later) have great difficulty spelling. Anyway the surgery didn't help. (Now I have a pain in the neck). I went through all the newest meds, plasmapheresis, etc. All the workups for latent cancers. My mother and her brother died of lung cancer so the people at Northwestern are sure that I have a hidden Lung Cancer somewhere. Then I was told that I had End Stage Diabetes by a Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have hypoglycemia That was the only time I really got angry. Finally after I got Sepsis from an infected central line when I was having plasmaphersis (At this point I was still working every day and having the procedure done three evenings a week taking vicodin like House on TV) The doctor would not let me go back to work. I agreed because something is affecting my memory. It is getting very bad, I am now on Namenda, if anyone else has that problem, it helps me. They biopsied the Sural nerve and a the Gastrocnemus muscle in the back of my leg and they were both positive for

sarcoid, so my doctor was right so many years ago. I use a Duragesic patch for pain with vicodin for breakthrough and my pain is controlled quite well that. I am not pain free but it isn't bad. I was on Neurontin also, but was recently switched to Lyrica. I do now have diabetes but not very bad, I attribute it to the prednisone. The wound is from the neuropathy. So, I have been on disability for 1 1/2 years now. I am sorry, you asked a simple question, ans I rambled. Eileen Rose wrote: A big cheery welcome to you! Do you go by MacLeen? I hope that optimism is contagious, because I think you have a remarkable attitude. Do you mind giving us a little

background on yourself? Married, kids, location? Are you diabetic, or are the ulcers the result of the sarc neuropathy? I'm interested, as I have severe peripheral neuropathy, getting worse. I'm probably diabetic too; will discuss lab results with my doctor next week. This is a great place to ask questions, give & get support, share information, vent, rant, whatever you need. Sometimes we share feelings here that we don't feel free to share with our families & friends. Visit the Links section for some great & varied resources; also the Archives for past information. You can access them at the bottom of each message sent through the group. You can also check out the Photo section & see what some of the NS family look like, or even used to look like. You may experience a lag in response time, as many of us are in varying stages of illness,

recovering from treatment, etc. Again, welcome to the group. You seem to have much to offer us; don't hesitate to voice your opinion. We don't always talk about rodents & hot tubs. But many of us find that some silliness relieves the anxiety & loneliness many experience. I hope that doesn't put you off. More later! Ramblin' Rose Moderator Reply-To:

Neurosarcoidosis To: Neurosarcoidosis Subject: NeuroSarcoidDate: Thu, 25 May 2006 06:07:50 -0000I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two

bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

I go by Eileen. I have been a nurse for forty years. Live in the good old USA. Married, three children, six grandchildren. All live close by. My doctors are very good to me. So I have a lot to be cheerful about. I had numbness and tingling for several years before I went to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor after my feet were totally numb almost to the knees and I was having pain. They started the workups then. I have an HMO and they have an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid but sent me to se a specialist in Chicago who said no and did a Spinal Tap and when the protein was very high he diagnosed me Chronic Inflammatory Demyelinating Polyradiculoneuropathy. They started out with some medication. I also had several scans and a total MRI of

my back. The MRI showed three cervical discs, two thoracic discs, and three lumbar discs were really messed up. (I had always told my students and co-workers that always used good body mechanics and if they followed my lead they would never have a back problem. So, then they gave me an injection into my cervical spine and wala! it helped with the pain. (that was back when the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion and lots of Hardware. Done in UIC by a team of specialists. Came out fine, came home, did well, went back to work and worked for a few hours. (I was the Director of Nursing) and started to sign my name to something and could not spell my name. Well, hadn't tried to do that since surgery. I still have (5 years later) have great difficulty spelling. Anyway the surgery didn't help. (Now I have a pain in the neck). I went through all the newest meds, plasmapheresis, etc. All the workups for latent cancers. My mother and her brother died of lung cancer so the people at Northwestern are sure that I have a hidden Lung Cancer somewhere. Then I was told that I had End Stage Diabetes by a Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have hypoglycemia That was the only time I really got angry. Finally after I got Sepsis from an infected central line when I was having plasmaphersis (At this point I was still working every day and having the procedure done three evenings a week taking vicodin like House on TV) The doctor would not let me go back to work. I agreed because something is affecting my memory. It is getting very bad, I am now on Namenda, if anyone else has that problem, it helps me. They biopsied the Sural nerve and a the Gastrocnemus muscle in the back of my leg and they were both positive for

sarcoid, so my doctor was right so many years ago. I use a Duragesic patch for pain with vicodin for breakthrough and my pain is controlled quite well that. I am not pain free but it isn't bad. I was on Neurontin also, but was recently switched to Lyrica. I do now have diabetes but not very bad, I attribute it to the prednisone. The wound is from the neuropathy. So, I have been on disability for 1 1/2 years now. I am sorry, you asked a simple question, ans I rambled. Eileen Rose wrote: A big cheery welcome to you! Do you go by MacLeen? I hope that optimism is contagious, because I think you have a remarkable attitude. Do you mind giving us a little

background on yourself? Married, kids, location? Are you diabetic, or are the ulcers the result of the sarc neuropathy? I'm interested, as I have severe peripheral neuropathy, getting worse. I'm probably diabetic too; will discuss lab results with my doctor next week. This is a great place to ask questions, give & get support, share information, vent, rant, whatever you need. Sometimes we share feelings here that we don't feel free to share with our families & friends. Visit the Links section for some great & varied resources; also the Archives for past information. You can access them at the bottom of each message sent through the group. You can also check out the Photo section & see what some of the NS family look like, or even used to look like. You may experience a lag in response time, as many of us are in varying stages of illness,

recovering from treatment, etc. Again, welcome to the group. You seem to have much to offer us; don't hesitate to voice your opinion. We don't always talk about rodents & hot tubs. But many of us find that some silliness relieves the anxiety & loneliness many experience. I hope that doesn't put you off. More later! Ramblin' Rose Moderator Reply-To:

Neurosarcoidosis To: Neurosarcoidosis Subject: NeuroSarcoidDate: Thu, 25 May 2006 06:07:50 -0000I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two

bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

I go by Eileen. I have been a nurse for forty years. Live in the good old USA. Married, three children, six grandchildren. All live close by. My doctors are very good to me. So I have a lot to be cheerful about. I had numbness and tingling for several years before I went to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor after my feet were totally numb almost to the knees and I was having pain. They started the workups then. I have an HMO and they have an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid but sent me to se a specialist in Chicago who said no and did a Spinal Tap and when the protein was very high he diagnosed me Chronic Inflammatory Demyelinating Polyradiculoneuropathy. They started out with some medication. I also had several scans and a total MRI of

my back. The MRI showed three cervical discs, two thoracic discs, and three lumbar discs were really messed up. (I had always told my students and co-workers that always used good body mechanics and if they followed my lead they would never have a back problem. So, then they gave me an injection into my cervical spine and wala! it helped with the pain. (that was back when the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion and lots of Hardware. Done in UIC by a team of specialists. Came out fine, came home, did well, went back to work and worked for a few hours. (I was the Director of Nursing) and started to sign my name to something and could not spell my name. Well, hadn't tried to do that since surgery. I still have (5 years later) have great difficulty spelling. Anyway the surgery didn't help. (Now I have a pain in the neck). I went through all the newest meds, plasmapheresis, etc. All the workups for latent cancers. My mother and her brother died of lung cancer so the people at Northwestern are sure that I have a hidden Lung Cancer somewhere. Then I was told that I had End Stage Diabetes by a Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have hypoglycemia That was the only time I really got angry. Finally after I got Sepsis from an infected central line when I was having plasmaphersis (At this point I was still working every day and having the procedure done three evenings a week taking vicodin like House on TV) The doctor would not let me go back to work. I agreed because something is affecting my memory. It is getting very bad, I am now on Namenda, if anyone else has that problem, it helps me. They biopsied the Sural nerve and a the Gastrocnemus muscle in the back of my leg and they were both positive for

sarcoid, so my doctor was right so many years ago. I use a Duragesic patch for pain with vicodin for breakthrough and my pain is controlled quite well that. I am not pain free but it isn't bad. I was on Neurontin also, but was recently switched to Lyrica. I do now have diabetes but not very bad, I attribute it to the prednisone. The wound is from the neuropathy. So, I have been on disability for 1 1/2 years now. I am sorry, you asked a simple question, ans I rambled. Eileen Rose wrote: A big cheery welcome to you! Do you go by MacLeen? I hope that optimism is contagious, because I think you have a remarkable attitude. Do you mind giving us a little

background on yourself? Married, kids, location? Are you diabetic, or are the ulcers the result of the sarc neuropathy? I'm interested, as I have severe peripheral neuropathy, getting worse. I'm probably diabetic too; will discuss lab results with my doctor next week. This is a great place to ask questions, give & get support, share information, vent, rant, whatever you need. Sometimes we share feelings here that we don't feel free to share with our families & friends. Visit the Links section for some great & varied resources; also the Archives for past information. You can access them at the bottom of each message sent through the group. You can also check out the Photo section & see what some of the NS family look like, or even used to look like. You may experience a lag in response time, as many of us are in varying stages of illness,

recovering from treatment, etc. Again, welcome to the group. You seem to have much to offer us; don't hesitate to voice your opinion. We don't always talk about rodents & hot tubs. But many of us find that some silliness relieves the anxiety & loneliness many experience. I hope that doesn't put you off. More later! Ramblin' Rose Moderator Reply-To:

Neurosarcoidosis To: Neurosarcoidosis Subject: NeuroSarcoidDate: Thu, 25 May 2006 06:07:50 -0000I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two

bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

I go by Eileen. I have been a nurse for forty years. Live in the good old USA. Married, three children, six grandchildren. All live close by. My doctors are very good to me. So I have a lot to be cheerful about. I had numbness and tingling for several years before I went to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor after my feet were totally numb almost to the knees and I was having pain. They started the workups then. I have an HMO and they have an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid but sent me to se a specialist in Chicago who said no and did a Spinal Tap and when the protein was very high he diagnosed me Chronic Inflammatory Demyelinating Polyradiculoneuropathy. They started out with some medication. I also had several scans and a total MRI of

my back. The MRI showed three cervical discs, two thoracic discs, and three lumbar discs were really messed up. (I had always told my students and co-workers that always used good body mechanics and if they followed my lead they would never have a back problem. So, then they gave me an injection into my cervical spine and wala! it helped with the pain. (that was back when the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion and lots of Hardware. Done in UIC by a team of specialists. Came out fine, came home, did well, went back to work and worked for a few hours. (I was the Director of Nursing) and started to sign my name to something and could not spell my name. Well, hadn't tried to do that since surgery. I still have (5 years later) have great difficulty spelling. Anyway the surgery didn't help. (Now I have a pain in the neck). I went through all the newest meds, plasmapheresis, etc. All the workups for latent cancers. My mother and her brother died of lung cancer so the people at Northwestern are sure that I have a hidden Lung Cancer somewhere. Then I was told that I had End Stage Diabetes by a Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have hypoglycemia That was the only time I really got angry. Finally after I got Sepsis from an infected central line when I was having plasmaphersis (At this point I was still working every day and having the procedure done three evenings a week taking vicodin like House on TV) The doctor would not let me go back to work. I agreed because something is affecting my memory. It is getting very bad, I am now on Namenda, if anyone else has that problem, it helps me. They biopsied the Sural nerve and a the Gastrocnemus muscle in the back of my leg and they were both positive for

sarcoid, so my doctor was right so many years ago. I use a Duragesic patch for pain with vicodin for breakthrough and my pain is controlled quite well that. I am not pain free but it isn't bad. I was on Neurontin also, but was recently switched to Lyrica. I do now have diabetes but not very bad, I attribute it to the prednisone. The wound is from the neuropathy. So, I have been on disability for 1 1/2 years now. I am sorry, you asked a simple question, ans I rambled. Eileen Rose wrote: A big cheery welcome to you! Do you go by MacLeen? I hope that optimism is contagious, because I think you have a remarkable attitude. Do you mind giving us a little

background on yourself? Married, kids, location? Are you diabetic, or are the ulcers the result of the sarc neuropathy? I'm interested, as I have severe peripheral neuropathy, getting worse. I'm probably diabetic too; will discuss lab results with my doctor next week. This is a great place to ask questions, give & get support, share information, vent, rant, whatever you need. Sometimes we share feelings here that we don't feel free to share with our families & friends. Visit the Links section for some great & varied resources; also the Archives for past information. You can access them at the bottom of each message sent through the group. You can also check out the Photo section & see what some of the NS family look like, or even used to look like. You may experience a lag in response time, as many of us are in varying stages of illness,

recovering from treatment, etc. Again, welcome to the group. You seem to have much to offer us; don't hesitate to voice your opinion. We don't always talk about rodents & hot tubs. But many of us find that some silliness relieves the anxiety & loneliness many experience. I hope that doesn't put you off. More later! Ramblin' Rose Moderator Reply-To:

Neurosarcoidosis To: Neurosarcoidosis Subject: NeuroSarcoidDate: Thu, 25 May 2006 06:07:50 -0000I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two

bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

I go by Eileen. I have been a nurse for forty years. Live in the good old USA. Married, three children, six grandchildren. All live close by. My doctors are very good to me. So I have a lot to be cheerful about. I had numbness and tingling for several years before I went to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor after my feet were totally numb almost to the knees and I was having pain. They started the workups then. I have an HMO and they have an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid but sent me to se a specialist in Chicago who said no and did a Spinal Tap and when the protein was very high he diagnosed me Chronic Inflammatory Demyelinating Polyradiculoneuropathy. They started out with some medication. I also had several scans and a total MRI of

my back. The MRI showed three cervical discs, two thoracic discs, and three lumbar discs were really messed up. (I had always told my students and co-workers that always used good body mechanics and if they followed my lead they would never have a back problem. So, then they gave me an injection into my cervical spine and wala! it helped with the pain. (that was back when the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion and lots of Hardware. Done in UIC by a team of specialists. Came out fine, came home, did well, went back to work and worked for a few hours. (I was the Director of Nursing) and started to sign my name to something and could not spell my name. Well, hadn't tried to do that since surgery. I still have (5 years later) have great difficulty spelling. Anyway the surgery didn't help. (Now I have a pain in the neck). I went through all the newest meds, plasmapheresis, etc. All the workups for latent cancers. My mother and her brother died of lung cancer so the people at Northwestern are sure that I have a hidden Lung Cancer somewhere. Then I was told that I had End Stage Diabetes by a Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have hypoglycemia That was the only time I really got angry. Finally after I got Sepsis from an infected central line when I was having plasmaphersis (At this point I was still working every day and having the procedure done three evenings a week taking vicodin like House on TV) The doctor would not let me go back to work. I agreed because something is affecting my memory. It is getting very bad, I am now on Namenda, if anyone else has that problem, it helps me. They biopsied the Sural nerve and a the Gastrocnemus muscle in the back of my leg and they were both positive for

sarcoid, so my doctor was right so many years ago. I use a Duragesic patch for pain with vicodin for breakthrough and my pain is controlled quite well that. I am not pain free but it isn't bad. I was on Neurontin also, but was recently switched to Lyrica. I do now have diabetes but not very bad, I attribute it to the prednisone. The wound is from the neuropathy. So, I have been on disability for 1 1/2 years now. I am sorry, you asked a simple question, ans I rambled. Eileen Rose wrote: A big cheery welcome to you! Do you go by MacLeen? I hope that optimism is contagious, because I think you have a remarkable attitude. Do you mind giving us a little

background on yourself? Married, kids, location? Are you diabetic, or are the ulcers the result of the sarc neuropathy? I'm interested, as I have severe peripheral neuropathy, getting worse. I'm probably diabetic too; will discuss lab results with my doctor next week. This is a great place to ask questions, give & get support, share information, vent, rant, whatever you need. Sometimes we share feelings here that we don't feel free to share with our families & friends. Visit the Links section for some great & varied resources; also the Archives for past information. You can access them at the bottom of each message sent through the group. You can also check out the Photo section & see what some of the NS family look like, or even used to look like. You may experience a lag in response time, as many of us are in varying stages of illness,

recovering from treatment, etc. Again, welcome to the group. You seem to have much to offer us; don't hesitate to voice your opinion. We don't always talk about rodents & hot tubs. But many of us find that some silliness relieves the anxiety & loneliness many experience. I hope that doesn't put you off. More later! Ramblin' Rose Moderator Reply-To:

Neurosarcoidosis To: Neurosarcoidosis Subject: NeuroSarcoidDate: Thu, 25 May 2006 06:07:50 -0000I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two

bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Eileen, don't worry about rambling. There's a reason I go by Ramblin' Rose! There are quite a few nurses & other health care workers on this list. You probably already know this, but there is a higher incidence of sarc in health care workers.

Most of us who've had to quit working have experienced a sense of loss & grief. I had worked as a certified nurse-midwife for 20 years; before that as a labor & delivery nurse for 10 yrs. It was very difficult for me to give that up, but I could no longer practice safely.

I'm also on Lyrica, as well as Cymbalta, for the neuropathic pain. It makes it tolerable, most of the time. I have to keep my feet elevated or they begin to feel like they'll explode & like hot little knives sticking in them. Lately I've been blessed with some new sensations. My big toes only have felt like a crab latched on, pinching hard! Then last night the toe next to my pinky toe started hurting in just one spot. My daughter, who's a medical assistant, looked at it with me & there was absolutely nothing visible, but just a light touch made me yelp. I couldn't even wear my slippers. But today it's fine, as in back to the usual pain. Probably just another nerve firing wrong. It's worrisome though, because I'm also diabetic, I think. My gyn nurse-practitioner checked my FBS & insulin levels a few weeks ago when I had my pap. I've had slightly elevated insulin levels the last couple of years & blood sugars all over the place. I had a 3 hour GTT three years ago, which was normal, but 3 values were just barely normal. My PCP did a HgAlC in Feb., which was also just barely normal. My FBS was 134 & the insulin level was 56, which is significantly up. She sent the results to my PCP to follow-up. I haven't heard from him, but I have an appt in two weeks, so I'll talk about it then. With the insulin resistance, I'm hoping he'll put me on Glucophage & maybe I'll lose some weight!

Anyway, back to you. I gather you live up near Chicago? I'm in , Indiana, about 40 mi. NE of Indy. Did you ever have a sleep study? You might have Restless Legs Syndrome also--it's very common with sarc, along with PLMD (Periodic Limb Movement Disorder), which I have. I take Klonopin 1mg at night & that has decreased the movements a lot. I'm curious about the Namenda. I looked it up & saw it's used for Alzheimer's. Did your doctors just decide to try it for your memory or has some research been done on it? I would really like to get some memory improvement.

Isn't it a shame that your original neurologist recognized the sarc, but all those specialists missed the boat. I too have many degenerated discs, two herniated in my lower back, and I've had a cervical spinal fusion at C6-7. It was actually very successful. I'm ashamed to admit that even though I knew proper body mechanics, I was a poor practitioner. When you are young, you just tend to blow that stuff off. But over the years, the damage builds up. I'm going to a pain clinic in Indy 6/6, primarily for my back, but they also treat neuropathic pain.

Well, I rambled right back at you! What kind of nursing did you do? I've been on disability for 2-1/2 years. My last birth was 8/1/03, my niece's second baby. I was waiting for her to deliver, then I was done. I was pretty emotional knowing it was my last birth (I've attended over 3000 births in my career, including 3 of my grandkids), but it was nice that it was family.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: NeuroSarcoidDate: Fri, 26 May 2006 05:04:38 -0700 (PDT)

I go by Eileen. I have been a nurse for forty years. Live in the good old USA. Married, three children, six grandchildren. All live close by. My doctors are very good to me.

So I have a lot to be cheerful about.

I had numbness and tingling for several years before I went to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor after my feet were totally numb almost to the knees and I was having pain.

They started the workups then. I have an HMO and they have an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid but sent me to se a specialist in Chicago who said no and did a Spinal Tap and when the protein was very high he diagnosed me Chronic Inflammatory Demyelinating Polyradiculoneuropathy. They started out with some medication.

I also had several scans and a total MRI of my back. The MRI showed three cervical discs, two thoracic discs, and three lumbar discs were really messed up. (I had always told my students and co-workers that always used good body mechanics and if they followed my lead they would never have a back problem. So, then they gave me an injection into my cervical spine and wala! it helped with the pain. (that was back when the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion and lots of Hardware. Done in UIC by a team of specialists.

Came out fine, came home, did well, went back to work and worked for a few hours. (I was the Director of Nursing) and started to sign my name to something and could not spell my name. Well, hadn't tried to do that since surgery. I still have (5 years later) have great difficulty spelling.

Anyway the surgery didn't help. (Now I have a pain in the neck).

I went through all the newest meds, plasmapheresis, etc. All the workups for latent cancers. My mother and her brother died of lung cancer so the people at Northwestern are sure that I have a hidden Lung Cancer somewhere.

Then I was told that I had End Stage Diabetes by a Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have hypoglycemia That was the only time I really got angry.

Finally after I got Sepsis from an infected central line when I was having plasmaphersis (At this point I was still working every day and having the procedure done three evenings a week taking vicodin like House on TV) The doctor would not let me go back to work. I agreed because something is affecting my memory. It is getting very bad, I am now on Namenda, if anyone else has that problem, it helps me.

They biopsied the Sural nerve and a the Gastrocnemus muscle in the back of my leg and they were both positive for sarcoid, so my doctor was right so many years ago.

I use a Duragesic patch for pain with vicodin for breakthrough and my pain is controlled quite well that. I am not pain free but it isn't bad. I was on Neurontin also, but was recently switched to Lyrica.

I do now have diabetes but not very bad, I attribute it to the prednisone. The wound is from the neuropathy.

So, I have been on disability for 1 1/2 years now.

I am sorry, you asked a simple question, ans I rambled.

Eileen

Rose wrote:

A big cheery welcome to you! Do you go by MacLeen? I hope that optimism is contagious, because I think you have a remarkable attitude. Do you mind giving us a little background on yourself? Married, kids, location? Are you diabetic, or are the ulcers the result of the sarc neuropathy? I'm interested, as I have severe peripheral neuropathy, getting worse. I'm probably diabetic too; will discuss lab results with my doctor next week.

This is a great place to ask questions, give & get support, share information, vent, rant, whatever you need. Sometimes we share feelings here that we don't feel free to share with our families & friends. Visit the Links section for some great & varied resources; also the Archives for past information. You can access them at the bottom of each message sent through the group. You can also check out the Photo section & see what some of the NS family look like, or even used to look like.

You may experience a lag in response time, as many of us are in varying stages of illness, recovering from treatment, etc. Again, welcome to the group. You seem to have much to offer us; don't hesitate to voice your opinion.

We don't always talk about rodents & hot tubs. But many of us find that some silliness relieves the anxiety & loneliness many experience. I hope that doesn't put you off. More later!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: NeuroSarcoidDate: Thu, 25 May 2006 06:07:50 -0000I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Eileen, don't worry about rambling. There's a reason I go by Ramblin' Rose! There are quite a few nurses & other health care workers on this list. You probably already know this, but there is a higher incidence of sarc in health care workers.

Most of us who've had to quit working have experienced a sense of loss & grief. I had worked as a certified nurse-midwife for 20 years; before that as a labor & delivery nurse for 10 yrs. It was very difficult for me to give that up, but I could no longer practice safely.

I'm also on Lyrica, as well as Cymbalta, for the neuropathic pain. It makes it tolerable, most of the time. I have to keep my feet elevated or they begin to feel like they'll explode & like hot little knives sticking in them. Lately I've been blessed with some new sensations. My big toes only have felt like a crab latched on, pinching hard! Then last night the toe next to my pinky toe started hurting in just one spot. My daughter, who's a medical assistant, looked at it with me & there was absolutely nothing visible, but just a light touch made me yelp. I couldn't even wear my slippers. But today it's fine, as in back to the usual pain. Probably just another nerve firing wrong. It's worrisome though, because I'm also diabetic, I think. My gyn nurse-practitioner checked my FBS & insulin levels a few weeks ago when I had my pap. I've had slightly elevated insulin levels the last couple of years & blood sugars all over the place. I had a 3 hour GTT three years ago, which was normal, but 3 values were just barely normal. My PCP did a HgAlC in Feb., which was also just barely normal. My FBS was 134 & the insulin level was 56, which is significantly up. She sent the results to my PCP to follow-up. I haven't heard from him, but I have an appt in two weeks, so I'll talk about it then. With the insulin resistance, I'm hoping he'll put me on Glucophage & maybe I'll lose some weight!

Anyway, back to you. I gather you live up near Chicago? I'm in , Indiana, about 40 mi. NE of Indy. Did you ever have a sleep study? You might have Restless Legs Syndrome also--it's very common with sarc, along with PLMD (Periodic Limb Movement Disorder), which I have. I take Klonopin 1mg at night & that has decreased the movements a lot. I'm curious about the Namenda. I looked it up & saw it's used for Alzheimer's. Did your doctors just decide to try it for your memory or has some research been done on it? I would really like to get some memory improvement.

Isn't it a shame that your original neurologist recognized the sarc, but all those specialists missed the boat. I too have many degenerated discs, two herniated in my lower back, and I've had a cervical spinal fusion at C6-7. It was actually very successful. I'm ashamed to admit that even though I knew proper body mechanics, I was a poor practitioner. When you are young, you just tend to blow that stuff off. But over the years, the damage builds up. I'm going to a pain clinic in Indy 6/6, primarily for my back, but they also treat neuropathic pain.

Well, I rambled right back at you! What kind of nursing did you do? I've been on disability for 2-1/2 years. My last birth was 8/1/03, my niece's second baby. I was waiting for her to deliver, then I was done. I was pretty emotional knowing it was my last birth (I've attended over 3000 births in my career, including 3 of my grandkids), but it was nice that it was family.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: NeuroSarcoidDate: Fri, 26 May 2006 05:04:38 -0700 (PDT)

I go by Eileen. I have been a nurse for forty years. Live in the good old USA. Married, three children, six grandchildren. All live close by. My doctors are very good to me.

So I have a lot to be cheerful about.

I had numbness and tingling for several years before I went to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor after my feet were totally numb almost to the knees and I was having pain.

They started the workups then. I have an HMO and they have an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid but sent me to se a specialist in Chicago who said no and did a Spinal Tap and when the protein was very high he diagnosed me Chronic Inflammatory Demyelinating Polyradiculoneuropathy. They started out with some medication.

I also had several scans and a total MRI of my back. The MRI showed three cervical discs, two thoracic discs, and three lumbar discs were really messed up. (I had always told my students and co-workers that always used good body mechanics and if they followed my lead they would never have a back problem. So, then they gave me an injection into my cervical spine and wala! it helped with the pain. (that was back when the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion and lots of Hardware. Done in UIC by a team of specialists.

Came out fine, came home, did well, went back to work and worked for a few hours. (I was the Director of Nursing) and started to sign my name to something and could not spell my name. Well, hadn't tried to do that since surgery. I still have (5 years later) have great difficulty spelling.

Anyway the surgery didn't help. (Now I have a pain in the neck).

I went through all the newest meds, plasmapheresis, etc. All the workups for latent cancers. My mother and her brother died of lung cancer so the people at Northwestern are sure that I have a hidden Lung Cancer somewhere.

Then I was told that I had End Stage Diabetes by a Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have hypoglycemia That was the only time I really got angry.

Finally after I got Sepsis from an infected central line when I was having plasmaphersis (At this point I was still working every day and having the procedure done three evenings a week taking vicodin like House on TV) The doctor would not let me go back to work. I agreed because something is affecting my memory. It is getting very bad, I am now on Namenda, if anyone else has that problem, it helps me.

They biopsied the Sural nerve and a the Gastrocnemus muscle in the back of my leg and they were both positive for sarcoid, so my doctor was right so many years ago.

I use a Duragesic patch for pain with vicodin for breakthrough and my pain is controlled quite well that. I am not pain free but it isn't bad. I was on Neurontin also, but was recently switched to Lyrica.

I do now have diabetes but not very bad, I attribute it to the prednisone. The wound is from the neuropathy.

So, I have been on disability for 1 1/2 years now.

I am sorry, you asked a simple question, ans I rambled.

Eileen

Rose wrote:

A big cheery welcome to you! Do you go by MacLeen? I hope that optimism is contagious, because I think you have a remarkable attitude. Do you mind giving us a little background on yourself? Married, kids, location? Are you diabetic, or are the ulcers the result of the sarc neuropathy? I'm interested, as I have severe peripheral neuropathy, getting worse. I'm probably diabetic too; will discuss lab results with my doctor next week.

This is a great place to ask questions, give & get support, share information, vent, rant, whatever you need. Sometimes we share feelings here that we don't feel free to share with our families & friends. Visit the Links section for some great & varied resources; also the Archives for past information. You can access them at the bottom of each message sent through the group. You can also check out the Photo section & see what some of the NS family look like, or even used to look like.

You may experience a lag in response time, as many of us are in varying stages of illness, recovering from treatment, etc. Again, welcome to the group. You seem to have much to offer us; don't hesitate to voice your opinion.

We don't always talk about rodents & hot tubs. But many of us find that some silliness relieves the anxiety & loneliness many experience. I hope that doesn't put you off. More later!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: NeuroSarcoidDate: Thu, 25 May 2006 06:07:50 -0000I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Eileen, don't worry about rambling. There's a reason I go by Ramblin' Rose! There are quite a few nurses & other health care workers on this list. You probably already know this, but there is a higher incidence of sarc in health care workers.

Most of us who've had to quit working have experienced a sense of loss & grief. I had worked as a certified nurse-midwife for 20 years; before that as a labor & delivery nurse for 10 yrs. It was very difficult for me to give that up, but I could no longer practice safely.

I'm also on Lyrica, as well as Cymbalta, for the neuropathic pain. It makes it tolerable, most of the time. I have to keep my feet elevated or they begin to feel like they'll explode & like hot little knives sticking in them. Lately I've been blessed with some new sensations. My big toes only have felt like a crab latched on, pinching hard! Then last night the toe next to my pinky toe started hurting in just one spot. My daughter, who's a medical assistant, looked at it with me & there was absolutely nothing visible, but just a light touch made me yelp. I couldn't even wear my slippers. But today it's fine, as in back to the usual pain. Probably just another nerve firing wrong. It's worrisome though, because I'm also diabetic, I think. My gyn nurse-practitioner checked my FBS & insulin levels a few weeks ago when I had my pap. I've had slightly elevated insulin levels the last couple of years & blood sugars all over the place. I had a 3 hour GTT three years ago, which was normal, but 3 values were just barely normal. My PCP did a HgAlC in Feb., which was also just barely normal. My FBS was 134 & the insulin level was 56, which is significantly up. She sent the results to my PCP to follow-up. I haven't heard from him, but I have an appt in two weeks, so I'll talk about it then. With the insulin resistance, I'm hoping he'll put me on Glucophage & maybe I'll lose some weight!

Anyway, back to you. I gather you live up near Chicago? I'm in , Indiana, about 40 mi. NE of Indy. Did you ever have a sleep study? You might have Restless Legs Syndrome also--it's very common with sarc, along with PLMD (Periodic Limb Movement Disorder), which I have. I take Klonopin 1mg at night & that has decreased the movements a lot. I'm curious about the Namenda. I looked it up & saw it's used for Alzheimer's. Did your doctors just decide to try it for your memory or has some research been done on it? I would really like to get some memory improvement.

Isn't it a shame that your original neurologist recognized the sarc, but all those specialists missed the boat. I too have many degenerated discs, two herniated in my lower back, and I've had a cervical spinal fusion at C6-7. It was actually very successful. I'm ashamed to admit that even though I knew proper body mechanics, I was a poor practitioner. When you are young, you just tend to blow that stuff off. But over the years, the damage builds up. I'm going to a pain clinic in Indy 6/6, primarily for my back, but they also treat neuropathic pain.

Well, I rambled right back at you! What kind of nursing did you do? I've been on disability for 2-1/2 years. My last birth was 8/1/03, my niece's second baby. I was waiting for her to deliver, then I was done. I was pretty emotional knowing it was my last birth (I've attended over 3000 births in my career, including 3 of my grandkids), but it was nice that it was family.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: NeuroSarcoidDate: Fri, 26 May 2006 05:04:38 -0700 (PDT)

I go by Eileen. I have been a nurse for forty years. Live in the good old USA. Married, three children, six grandchildren. All live close by. My doctors are very good to me.

So I have a lot to be cheerful about.

I had numbness and tingling for several years before I went to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor after my feet were totally numb almost to the knees and I was having pain.

They started the workups then. I have an HMO and they have an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid but sent me to se a specialist in Chicago who said no and did a Spinal Tap and when the protein was very high he diagnosed me Chronic Inflammatory Demyelinating Polyradiculoneuropathy. They started out with some medication.

I also had several scans and a total MRI of my back. The MRI showed three cervical discs, two thoracic discs, and three lumbar discs were really messed up. (I had always told my students and co-workers that always used good body mechanics and if they followed my lead they would never have a back problem. So, then they gave me an injection into my cervical spine and wala! it helped with the pain. (that was back when the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion and lots of Hardware. Done in UIC by a team of specialists.

Came out fine, came home, did well, went back to work and worked for a few hours. (I was the Director of Nursing) and started to sign my name to something and could not spell my name. Well, hadn't tried to do that since surgery. I still have (5 years later) have great difficulty spelling.

Anyway the surgery didn't help. (Now I have a pain in the neck).

I went through all the newest meds, plasmapheresis, etc. All the workups for latent cancers. My mother and her brother died of lung cancer so the people at Northwestern are sure that I have a hidden Lung Cancer somewhere.

Then I was told that I had End Stage Diabetes by a Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have hypoglycemia That was the only time I really got angry.

Finally after I got Sepsis from an infected central line when I was having plasmaphersis (At this point I was still working every day and having the procedure done three evenings a week taking vicodin like House on TV) The doctor would not let me go back to work. I agreed because something is affecting my memory. It is getting very bad, I am now on Namenda, if anyone else has that problem, it helps me.

They biopsied the Sural nerve and a the Gastrocnemus muscle in the back of my leg and they were both positive for sarcoid, so my doctor was right so many years ago.

I use a Duragesic patch for pain with vicodin for breakthrough and my pain is controlled quite well that. I am not pain free but it isn't bad. I was on Neurontin also, but was recently switched to Lyrica.

I do now have diabetes but not very bad, I attribute it to the prednisone. The wound is from the neuropathy.

So, I have been on disability for 1 1/2 years now.

I am sorry, you asked a simple question, ans I rambled.

Eileen

Rose wrote:

A big cheery welcome to you! Do you go by MacLeen? I hope that optimism is contagious, because I think you have a remarkable attitude. Do you mind giving us a little background on yourself? Married, kids, location? Are you diabetic, or are the ulcers the result of the sarc neuropathy? I'm interested, as I have severe peripheral neuropathy, getting worse. I'm probably diabetic too; will discuss lab results with my doctor next week.

This is a great place to ask questions, give & get support, share information, vent, rant, whatever you need. Sometimes we share feelings here that we don't feel free to share with our families & friends. Visit the Links section for some great & varied resources; also the Archives for past information. You can access them at the bottom of each message sent through the group. You can also check out the Photo section & see what some of the NS family look like, or even used to look like.

You may experience a lag in response time, as many of us are in varying stages of illness, recovering from treatment, etc. Again, welcome to the group. You seem to have much to offer us; don't hesitate to voice your opinion.

We don't always talk about rodents & hot tubs. But many of us find that some silliness relieves the anxiety & loneliness many experience. I hope that doesn't put you off. More later!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: NeuroSarcoidDate: Thu, 25 May 2006 06:07:50 -0000I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Eileen,

Never worry about rambling we all

do it, it’s good for the soul. Wow you’ve had a long

road. I too am an RN there are many nurses in this Sarcoid family

here. I used to work Labor and delivery until I started going numb and

losing my balance big time, at first I blamed it on tripping on all the cords

hooked up to mom, as I would catch myself on the edge of the bed, otherwise I

stayed close to the walls. But when I started to go blank when the doctor

would ask for something, well that was bad news and had to quit, for the second

time since I was dx with sarc. I have a lot of trouble like

you said with spelling, and just mentally check out from time to time. I

teach part time at a local community college, and it’s hard because the

words sometimes just don’t come out, and I just stand there with a blank

look on my face. As far as the pain goes, I have been blessed with a

healing, that took away more then 80 % of my pain, and I regained allot of

energy. I still deal with head pain and head issues. Thank you for

sharing your story.

Blessings,

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of Eileen Mac

Sent: Friday, May 26, 2006 6:05 AM

To: Neurosarcoidosis

Subject: RE: NeuroSarcoid

I go by Eileen. I have been a nurse for forty years. Live in

the good old USA. Married, three children, six grandchildren. All live close

by. My doctors are very good to me.

So I have a lot to be cheerful about.

I had numbness and tingling for several years before I went

to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a

lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor

after my feet were totally numb almost to the knees and I was having pain.

They started the workups then. I have an HMO and they have

an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid

but sent me to se a specialist in Chicago who said no and did a Spinal Tap and

when the protein was very high he diagnosed me Chronic Inflammatory

Demyelinating Polyradiculoneuropathy. They started out with some medication.

I also had several scans and a total MRI of my back. The MRI

showed three cervical discs, two thoracic discs, and three lumbar discs were

really messed up. (I had always told my students and co-workers that always

used good body mechanics and if they followed my lead they would never have a

back problem. So, then they gave me an injection

into my cervical spine and wala! it helped with the pain. (that was back when

the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion

and lots of Hardware. Done in UIC by a team of specialists.

Came out fine, came home, did well, went back to work and

worked for a few hours. (I was the Director of Nursing) and started to sign my

name to something and could not spell my name. Well, hadn't tried to do that

since surgery. I still have (5 years later) have great difficulty

spelling.

Anyway the surgery didn't help. (Now I have a pain in the

neck).

I went through all the newest meds, plasmapheresis, etc. All

the workups for latent cancers. My mother and her brother died of lung cancer

so the people at Northwestern are sure that I have a hidden Lung Cancer

somewhere.

Then I was told that I had End Stage Diabetes by a

Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have

hypoglycemia That was the only time I really got angry.

Finally after I got Sepsis from an infected

central line when I was having plasmaphersis (At this point I was still

working every day and having the procedure done three evenings a week taking

vicodin like House on TV) The doctor would not let me go back to work. I agreed

because something is affecting my memory. It is getting very bad, I am now on

Namenda, if anyone else has that problem, it helps me.

They biopsied the Sural nerve and a the Gastrocnemus muscle

in the back of my leg and they were both positive for sarcoid, so my doctor was

right so many years ago.

I use a Duragesic patch for pain with vicodin for breakthrough

and my pain is controlled quite well that. I am not pain free but it isn't bad.

I was on Neurontin also, but was recently switched to Lyrica.

I do now have diabetes but not very bad, I attribute it to

the prednisone. The wound is from the neuropathy.

So, I have been on disability for 1 1/2 years now.

I am sorry, you asked a simple question, ans I rambled.

Eileen

Rose

wrote:

A big cheery welcome to you! Do you go by

MacLeen? I hope that optimism is contagious, because I think you have a

remarkable attitude. Do you mind giving us a little background on

yourself? Married, kids, location? Are you diabetic, or are the

ulcers the result of the sarc neuropathy? I'm interested, as I have severe

peripheral neuropathy, getting worse. I'm probably diabetic too; will

discuss lab results with my doctor next week.

This is a great place to ask questions, give & get

support, share information, vent, rant, whatever you need. Sometimes we

share feelings here that we don't feel free to share with our families &

friends. Visit the Links section for some great & varied resources;

also the Archives for past information. You can access them at the bottom

of each message sent through the group. You can also check out the Photo

section & see what some of the NS family look like, or even used to look

like.

You may experience a lag in response time, as many of us are

in varying stages of illness, recovering from treatment, etc. Again,

welcome to the group. You seem to have much to offer us; don't hesitate

to voice your opinion.

We don't always talk about rodents & hot tubs. But

many of us find that some silliness relieves the anxiety & loneliness many

experience. I hope that doesn't put you off. More later!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis

To: Neurosarcoidosis

Subject: NeuroSarcoid

Date: Thu, 25 May 2006 06:07:50 -0000

I am new to this site. I have had Neurosarcoidosis for several years.

Can no longer work. Have now developed nodules in the pericardium.

Overall, I think I have done well compared to some of you whose

messages I have read. I have been on many meds and reacted to most of

them so had to settle for old basic medications. I was on large doses

of prednisone for years. I have had nonhealing neuropathic ulcers on my

feet for the last 19 months now. I had my second surgery (Deep

debridement with graft) on May 19th. So they have now decreased the

prednisone. I am now non-weight bearing again.

I had the first procedure done in January (the wound had been debrided

in the office and treated at a wound clinic for 13 months. Since

January I have had two bouts of Cellulitis in my leg, one requiring

hospitalization. However aside from this I have done OK except I have

difficulty walking,of course.

It is good to know you are out there. God Bless Each Of You.

macleen500

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Eileen,

Never worry about rambling we all

do it, it’s good for the soul. Wow you’ve had a long

road. I too am an RN there are many nurses in this Sarcoid family

here. I used to work Labor and delivery until I started going numb and

losing my balance big time, at first I blamed it on tripping on all the cords

hooked up to mom, as I would catch myself on the edge of the bed, otherwise I

stayed close to the walls. But when I started to go blank when the doctor

would ask for something, well that was bad news and had to quit, for the second

time since I was dx with sarc. I have a lot of trouble like

you said with spelling, and just mentally check out from time to time. I

teach part time at a local community college, and it’s hard because the

words sometimes just don’t come out, and I just stand there with a blank

look on my face. As far as the pain goes, I have been blessed with a

healing, that took away more then 80 % of my pain, and I regained allot of

energy. I still deal with head pain and head issues. Thank you for

sharing your story.

Blessings,

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of Eileen Mac

Sent: Friday, May 26, 2006 6:05 AM

To: Neurosarcoidosis

Subject: RE: NeuroSarcoid

I go by Eileen. I have been a nurse for forty years. Live in

the good old USA. Married, three children, six grandchildren. All live close

by. My doctors are very good to me.

So I have a lot to be cheerful about.

I had numbness and tingling for several years before I went

to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a

lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor

after my feet were totally numb almost to the knees and I was having pain.

They started the workups then. I have an HMO and they have

an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid

but sent me to se a specialist in Chicago who said no and did a Spinal Tap and

when the protein was very high he diagnosed me Chronic Inflammatory

Demyelinating Polyradiculoneuropathy. They started out with some medication.

I also had several scans and a total MRI of my back. The MRI

showed three cervical discs, two thoracic discs, and three lumbar discs were

really messed up. (I had always told my students and co-workers that always

used good body mechanics and if they followed my lead they would never have a

back problem. So, then they gave me an injection

into my cervical spine and wala! it helped with the pain. (that was back when

the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion

and lots of Hardware. Done in UIC by a team of specialists.

Came out fine, came home, did well, went back to work and

worked for a few hours. (I was the Director of Nursing) and started to sign my

name to something and could not spell my name. Well, hadn't tried to do that

since surgery. I still have (5 years later) have great difficulty

spelling.

Anyway the surgery didn't help. (Now I have a pain in the

neck).

I went through all the newest meds, plasmapheresis, etc. All

the workups for latent cancers. My mother and her brother died of lung cancer

so the people at Northwestern are sure that I have a hidden Lung Cancer

somewhere.

Then I was told that I had End Stage Diabetes by a

Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have

hypoglycemia That was the only time I really got angry.

Finally after I got Sepsis from an infected

central line when I was having plasmaphersis (At this point I was still

working every day and having the procedure done three evenings a week taking

vicodin like House on TV) The doctor would not let me go back to work. I agreed

because something is affecting my memory. It is getting very bad, I am now on

Namenda, if anyone else has that problem, it helps me.

They biopsied the Sural nerve and a the Gastrocnemus muscle

in the back of my leg and they were both positive for sarcoid, so my doctor was

right so many years ago.

I use a Duragesic patch for pain with vicodin for breakthrough

and my pain is controlled quite well that. I am not pain free but it isn't bad.

I was on Neurontin also, but was recently switched to Lyrica.

I do now have diabetes but not very bad, I attribute it to

the prednisone. The wound is from the neuropathy.

So, I have been on disability for 1 1/2 years now.

I am sorry, you asked a simple question, ans I rambled.

Eileen

Rose

wrote:

A big cheery welcome to you! Do you go by

MacLeen? I hope that optimism is contagious, because I think you have a

remarkable attitude. Do you mind giving us a little background on

yourself? Married, kids, location? Are you diabetic, or are the

ulcers the result of the sarc neuropathy? I'm interested, as I have severe

peripheral neuropathy, getting worse. I'm probably diabetic too; will

discuss lab results with my doctor next week.

This is a great place to ask questions, give & get

support, share information, vent, rant, whatever you need. Sometimes we

share feelings here that we don't feel free to share with our families &

friends. Visit the Links section for some great & varied resources;

also the Archives for past information. You can access them at the bottom

of each message sent through the group. You can also check out the Photo

section & see what some of the NS family look like, or even used to look

like.

You may experience a lag in response time, as many of us are

in varying stages of illness, recovering from treatment, etc. Again,

welcome to the group. You seem to have much to offer us; don't hesitate

to voice your opinion.

We don't always talk about rodents & hot tubs. But

many of us find that some silliness relieves the anxiety & loneliness many

experience. I hope that doesn't put you off. More later!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis

To: Neurosarcoidosis

Subject: NeuroSarcoid

Date: Thu, 25 May 2006 06:07:50 -0000

I am new to this site. I have had Neurosarcoidosis for several years.

Can no longer work. Have now developed nodules in the pericardium.

Overall, I think I have done well compared to some of you whose

messages I have read. I have been on many meds and reacted to most of

them so had to settle for old basic medications. I was on large doses

of prednisone for years. I have had nonhealing neuropathic ulcers on my

feet for the last 19 months now. I had my second surgery (Deep

debridement with graft) on May 19th. So they have now decreased the

prednisone. I am now non-weight bearing again.

I had the first procedure done in January (the wound had been debrided

in the office and treated at a wound clinic for 13 months. Since

January I have had two bouts of Cellulitis in my leg, one requiring

hospitalization. However aside from this I have done OK except I have

difficulty walking,of course.

It is good to know you are out there. God Bless Each Of You.

macleen500

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Marla, Don't we make so many excuses about what is happening to us? I am a cord magnet my feet will get tangled in a cord if they have to go across the room to find it. My sarcoid has remained in the peripheral nervous system. i have been so lucky, when I read the emails here some of the people have suffered tremendously. My worst days are that my hands shakes so that I drop things, I can hardly write anymore, typing takes forever. I walk with a cane. My speech is affected sometimes. I fall occasionally. I have a problem wound on my foot,. and my memory is bad. all in all that ain't bad. I can still take care of myself. I too worked in OB for six years, then I went into a telemetry unit and from ther into Intensive Care. Then I retired (for a month) then I went to a nursing home to work. Thanks for talking to me. Eileen Marla

Bramer wrote: Eileen, Never worry about rambling we all do it, it’s good for the soul. Wow you’ve had a long road. I too am an RN there are many nurses in this Sarcoid family here. I used to work Labor and delivery until I started going numb and losing my balance big time, at first I blamed it on tripping on all the cords hooked up to mom, as I would catch myself on the edge of the bed, otherwise I stayed close to the walls. But when I started to go blank when the doctor would ask for something, well that was bad news and had to quit, for the second time since I was dx with sarc. I have a lot of trouble like you said with spelling, and just mentally check out from time to time. I teach part time at a local community college, and it’s hard because the words sometimes just don’t come out, and I just stand there with a blank

look on my face. As far as the pain goes, I have been blessed with a healing, that took away more then 80 % of my pain, and I regained allot of energy. I still deal with head pain and head issues. Thank you for sharing your story. Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Eileen MacSent: Friday, May 26, 2006 6:05 AMTo:

Neurosarcoidosis Subject: RE: NeuroSarcoid I go by Eileen. I have been a nurse for forty years. Live in the good old USA. Married, three children, six grandchildren. All live close by. My doctors are very good to me. So I have a lot to be cheerful about. I had numbness and tingling for several years before I went to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor after my feet were totally numb almost to the knees and I was having pain. They started the workups then. I have an HMO and they have an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid

but sent me to se a specialist in Chicago who said no and did a Spinal Tap and when the protein was very high he diagnosed me Chronic Inflammatory Demyelinating Polyradiculoneuropathy. They started out with some medication. I also had several scans and a total MRI of my back. The MRI showed three cervical discs, two thoracic discs, and three lumbar discs were really messed up. (I had always told my students and co-workers that always used good body mechanics and if they followed my lead they would never have a back problem. So, then they gave me an injection into my cervical spine and wala! it helped with the pain. (that was back when the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion and lots of Hardware. Done in UIC by a team of specialists. Came out fine, came home, did well, went back to work and worked for a few hours. (I was the Director of Nursing) and started to sign my name to something and could not spell my name. Well, hadn't tried to do that since surgery. I still have (5 years later) have great difficulty spelling. Anyway the surgery didn't help. (Now I have a pain in the neck). I went through all the newest meds, plasmapheresis, etc. All the workups for latent cancers. My mother and her brother died

of lung cancer so the people at Northwestern are sure that I have a hidden Lung Cancer somewhere. Then I was told that I had End Stage Diabetes by a Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have hypoglycemia That was the only time I really got angry. Finally after I got Sepsis from an infected central line when I was having plasmaphersis (At this point I was still working every day and having the procedure done three evenings a week taking vicodin like House on TV) The doctor would not let me go back to work. I agreed because something is affecting my memory. It is getting very bad, I am now on Namenda, if anyone else has that problem, it helps me. They biopsied the Sural nerve and a the Gastrocnemus muscle in the back of my leg and they were both positive for sarcoid, so

my doctor was right so many years ago. I use a Duragesic patch for pain with vicodin for breakthrough and my pain is controlled quite well that. I am not pain free but it isn't bad. I was on Neurontin also, but was recently switched to Lyrica. I do now have diabetes but not very bad, I attribute it to the prednisone. The wound is from the neuropathy. So, I have been on disability for 1 1/2 years now. I am sorry, you asked a simple question, ans I rambled. Eileen Rose

wrote: A big cheery welcome to you! Do you go by MacLeen? I hope that optimism is contagious, because I think you have a remarkable attitude. Do you mind giving us a little background on yourself? Married, kids, location? Are you diabetic, or are the ulcers the result of the sarc neuropathy? I'm interested, as I have severe peripheral neuropathy, getting worse. I'm probably diabetic too; will discuss lab results with my doctor next week. This is a great place to ask questions, give & get support, share information, vent, rant, whatever you need.

Sometimes we share feelings here that we don't feel free to share with our families & friends. Visit the Links section for some great & varied resources; also the Archives for past information. You can access them at the bottom of each message sent through the group. You can also check out the Photo section & see what some of the NS family look like, or even used to look like. You may experience a lag in response time, as many of us are in varying stages of illness, recovering from treatment, etc. Again, welcome to the group. You seem to have much to offer us; don't hesitate to voice your opinion. We don't always talk about rodents & hot tubs. But many of us find that some silliness relieves the anxiety & loneliness many experience. I hope that doesn't put you off. More later! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: NeuroSarcoidDate: Thu, 25 May 2006 06:07:50 -0000I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing

neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Eileen,

There sure are a lot of nurses

here.  I have trouble with the short term memory, but whenever I say that to someone,

they just laugh and say, well we are all getting older and it’s just age, they

just don’t get it?  I find myself just going blank sometimes, can’t remember

what I was saying, and they tell me that’s age too, oh well, I really didn’t

think I looked that old, guess I need to start  using my own Kay with

double doses.  Lol

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of Eileen Mac

Sent: Friday, May 26, 2006 11:56 AM

To: Neurosarcoidosis

Subject: RE: NeuroSarcoid

Marla,

Don't we make so many excuses about what is happening to

us? I am a cord magnet my feet will get tangled in a cord if they have to

go across the room to find it.

My sarcoid has remained in the peripheral nervous system. i

have been so lucky, when I read the emails here some of the people have

suffered tremendously.

My worst days are that my hands shakes so that I drop

things, I can hardly write anymore, typing takes forever. I walk with a

cane. My speech is affected sometimes. I fall occasionally. I have a

problem wound on my foot,. and my memory is bad. all in all that ain't bad. I

can still take care of myself.

I too worked in OB for six years, then I went into a

telemetry unit and from ther into Intensive Care. Then I retired (for a month)

then I went to a nursing home to work.

Thanks for talking to me.

Eileen

Marla Bramer wrote:

Eileen,

Never worry about rambling we all

do it, it’s good for the soul. Wow you’ve had a long road. I

too am an RN there are many nurses in this Sarcoid family here. I used to

work Labor and delivery until I started going numb and losing my balance big

time, at first I blamed it on tripping on all the cords hooked up to mom, as I

would catch myself on the edge of the bed, otherwise I stayed close to the

walls. But when I started to go blank when the doctor would ask for

something, well that was bad news and had to quit, for the second time since I

was dx with sarc. I have a lot of trouble like you said with

spelling, and just mentally check out from time to time. I teach part

time at a local community college, and it’s hard because the words sometimes

just don’t come out, and I just stand there with a blank look on my

face. As far as the pain goes, I have been blessed with a healing, that

took away more then 80 % of my pain, and I regained allot of energy. I

still deal with head pain and head issues. Thank you for sharing your

story.

Blessings,

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of Eileen Mac

Sent: Friday, May 26, 2006 6:05 AM

To: Neurosarcoidosis

Subject: RE: NeuroSarcoid

I go by Eileen. I have been a nurse for forty years. Live in

the good old USA. Married, three children, six grandchildren. All live close

by. My doctors are very good to me.

So I have a lot to be cheerful about.

I had numbness and tingling for several years before I went

to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a

lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor

after my feet were totally numb almost to the knees and I was having pain.

They started the workups then. I have an HMO and they have

an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid

but sent me to se a specialist in Chicago who said no and did a Spinal Tap and

when the protein was very high he diagnosed me Chronic Inflammatory

Demyelinating Polyradiculoneuropathy. They started out with some medication.

I also had several scans and a total MRI of my back. The MRI

showed three cervical discs, two thoracic discs, and three lumbar discs were

really messed up. (I had always told my students and co-workers that always

used good body mechanics and if they followed my lead they would never have a

back problem. So, then they gave me an injection

into my cervical spine and wala! it helped with the pain. (that was back when

the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion

and lots of Hardware. Done in UIC by a team of specialists.

Came out fine, came home, did well, went back to work and

worked for a few hours. (I was the Director of Nursing) and started to sign my

name to something and could not spell my name. Well, hadn't tried to do that

since surgery. I still have (5 years later) have great difficulty

spelling.

Anyway the surgery didn't help. (Now I have a pain in the

neck).

I went through all the newest meds, plasmapheresis, etc. All

the workups for latent cancers. My mother and her brother died of lung cancer

so the people at Northwestern are sure that I have a hidden Lung Cancer

somewhere.

Then I was told that I had End Stage Diabetes by a

Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have

hypoglycemia That was the only time I really got angry.

Finally after I got Sepsis from an infected

central line when I was having plasmaphersis (At this point I was still

working every day and having the procedure done three evenings a week taking

vicodin like House on TV) The doctor would not let me go back to work. I agreed

because something is affecting my memory. It is getting very bad, I am now on

Namenda, if anyone else has that problem, it helps me.

They biopsied the Sural nerve and a the Gastrocnemus muscle

in the back of my leg and they were both positive for sarcoid, so my doctor was

right so many years ago.

I use a Duragesic patch for pain with vicodin for

breakthrough and my pain is controlled quite well that. I am not pain free but

it isn't bad. I was on Neurontin also, but was recently switched to Lyrica.

I do now have diabetes but not very bad, I attribute it to

the prednisone. The wound is from the neuropathy.

So, I have been on disability for 1 1/2 years now.

I am sorry, you asked a simple question, ans I rambled.

Eileen

Rose

wrote:

A big cheery welcome to you! Do you go by

MacLeen? I hope that optimism is contagious, because I think you have a

remarkable attitude. Do you mind giving us a little background on

yourself? Married, kids, location? Are you diabetic, or are the

ulcers the result of the sarc neuropathy? I'm interested, as I have

severe peripheral neuropathy, getting worse. I'm probably diabetic too;

will discuss lab results with my doctor next week.

This is a great place to ask questions, give & get

support, share information, vent, rant, whatever you need. Sometimes we

share feelings here that we don't feel free to share with our families &

friends. Visit the Links section for some great & varied resources;

also the Archives for past information. You can access them at the bottom

of each message sent through the group. You can also check out the Photo

section & see what some of the NS family look like, or even used to look

like.

You may experience a lag in response time, as many of us are

in varying stages of illness, recovering from treatment, etc. Again,

welcome to the group. You seem to have much to offer us; don't hesitate

to voice your opinion.

We don't always talk about rodents & hot tubs. But

many of us find that some silliness relieves the anxiety & loneliness many

experience. I hope that doesn't put you off. More later!

Ramblin' Rose

Moderator

From: " macleen500 "

Reply-To: Neurosarcoidosis

To: Neurosarcoidosis

Subject: NeuroSarcoid

Date: Thu, 25 May 2006 06:07:50 -0000

I am new to this site. I have had Neurosarcoidosis for several years.

Can no longer work. Have now developed nodules in the pericardium.

Overall, I think I have done well compared to some of you whose

messages I have read. I have been on many meds and reacted to most of

them so had to settle for old basic medications. I was on large doses

of prednisone for years. I have had nonhealing neuropathic ulcers on my

feet for the last 19 months now. I had my second surgery (Deep

debridement with graft) on May 19th. So they have now decreased the

prednisone. I am now non-weight bearing again.

I had the first procedure done in January (the wound had been debrided

in the office and treated at a wound clinic for 13 months. Since

January I have had two bouts of Cellulitis in my leg, one requiring

hospitalization. However aside from this I have done OK except I have

difficulty walking,of course.

It is good to know you are out there. God Bless Each Of You.

macleen500

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers,

and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Eileen,

There sure are a lot of nurses

here.  I have trouble with the short term memory, but whenever I say that to someone,

they just laugh and say, well we are all getting older and it’s just age, they

just don’t get it?  I find myself just going blank sometimes, can’t remember

what I was saying, and they tell me that’s age too, oh well, I really didn’t

think I looked that old, guess I need to start  using my own Kay with

double doses.  Lol

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of Eileen Mac

Sent: Friday, May 26, 2006 11:56 AM

To: Neurosarcoidosis

Subject: RE: NeuroSarcoid

Marla,

Don't we make so many excuses about what is happening to

us? I am a cord magnet my feet will get tangled in a cord if they have to

go across the room to find it.

My sarcoid has remained in the peripheral nervous system. i

have been so lucky, when I read the emails here some of the people have

suffered tremendously.

My worst days are that my hands shakes so that I drop

things, I can hardly write anymore, typing takes forever. I walk with a

cane. My speech is affected sometimes. I fall occasionally. I have a

problem wound on my foot,. and my memory is bad. all in all that ain't bad. I

can still take care of myself.

I too worked in OB for six years, then I went into a

telemetry unit and from ther into Intensive Care. Then I retired (for a month)

then I went to a nursing home to work.

Thanks for talking to me.

Eileen

Marla Bramer wrote:

Eileen,

Never worry about rambling we all

do it, it’s good for the soul. Wow you’ve had a long road. I

too am an RN there are many nurses in this Sarcoid family here. I used to

work Labor and delivery until I started going numb and losing my balance big

time, at first I blamed it on tripping on all the cords hooked up to mom, as I

would catch myself on the edge of the bed, otherwise I stayed close to the

walls. But when I started to go blank when the doctor would ask for

something, well that was bad news and had to quit, for the second time since I

was dx with sarc. I have a lot of trouble like you said with

spelling, and just mentally check out from time to time. I teach part

time at a local community college, and it’s hard because the words sometimes

just don’t come out, and I just stand there with a blank look on my

face. As far as the pain goes, I have been blessed with a healing, that

took away more then 80 % of my pain, and I regained allot of energy. I

still deal with head pain and head issues. Thank you for sharing your

story.

Blessings,

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of Eileen Mac

Sent: Friday, May 26, 2006 6:05 AM

To: Neurosarcoidosis

Subject: RE: NeuroSarcoid

I go by Eileen. I have been a nurse for forty years. Live in

the good old USA. Married, three children, six grandchildren. All live close

by. My doctors are very good to me.

So I have a lot to be cheerful about.

I had numbness and tingling for several years before I went

to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a

lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor

after my feet were totally numb almost to the knees and I was having pain.

They started the workups then. I have an HMO and they have

an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid

but sent me to se a specialist in Chicago who said no and did a Spinal Tap and

when the protein was very high he diagnosed me Chronic Inflammatory

Demyelinating Polyradiculoneuropathy. They started out with some medication.

I also had several scans and a total MRI of my back. The MRI

showed three cervical discs, two thoracic discs, and three lumbar discs were

really messed up. (I had always told my students and co-workers that always

used good body mechanics and if they followed my lead they would never have a

back problem. So, then they gave me an injection

into my cervical spine and wala! it helped with the pain. (that was back when

the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion

and lots of Hardware. Done in UIC by a team of specialists.

Came out fine, came home, did well, went back to work and

worked for a few hours. (I was the Director of Nursing) and started to sign my

name to something and could not spell my name. Well, hadn't tried to do that

since surgery. I still have (5 years later) have great difficulty

spelling.

Anyway the surgery didn't help. (Now I have a pain in the

neck).

I went through all the newest meds, plasmapheresis, etc. All

the workups for latent cancers. My mother and her brother died of lung cancer

so the people at Northwestern are sure that I have a hidden Lung Cancer

somewhere.

Then I was told that I had End Stage Diabetes by a

Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have

hypoglycemia That was the only time I really got angry.

Finally after I got Sepsis from an infected

central line when I was having plasmaphersis (At this point I was still

working every day and having the procedure done three evenings a week taking

vicodin like House on TV) The doctor would not let me go back to work. I agreed

because something is affecting my memory. It is getting very bad, I am now on

Namenda, if anyone else has that problem, it helps me.

They biopsied the Sural nerve and a the Gastrocnemus muscle

in the back of my leg and they were both positive for sarcoid, so my doctor was

right so many years ago.

I use a Duragesic patch for pain with vicodin for

breakthrough and my pain is controlled quite well that. I am not pain free but

it isn't bad. I was on Neurontin also, but was recently switched to Lyrica.

I do now have diabetes but not very bad, I attribute it to

the prednisone. The wound is from the neuropathy.

So, I have been on disability for 1 1/2 years now.

I am sorry, you asked a simple question, ans I rambled.

Eileen

Rose

wrote:

A big cheery welcome to you! Do you go by

MacLeen? I hope that optimism is contagious, because I think you have a

remarkable attitude. Do you mind giving us a little background on

yourself? Married, kids, location? Are you diabetic, or are the

ulcers the result of the sarc neuropathy? I'm interested, as I have

severe peripheral neuropathy, getting worse. I'm probably diabetic too;

will discuss lab results with my doctor next week.

This is a great place to ask questions, give & get

support, share information, vent, rant, whatever you need. Sometimes we

share feelings here that we don't feel free to share with our families &

friends. Visit the Links section for some great & varied resources;

also the Archives for past information. You can access them at the bottom

of each message sent through the group. You can also check out the Photo

section & see what some of the NS family look like, or even used to look

like.

You may experience a lag in response time, as many of us are

in varying stages of illness, recovering from treatment, etc. Again,

welcome to the group. You seem to have much to offer us; don't hesitate

to voice your opinion.

We don't always talk about rodents & hot tubs. But

many of us find that some silliness relieves the anxiety & loneliness many

experience. I hope that doesn't put you off. More later!

Ramblin' Rose

Moderator

From: " macleen500 "

Reply-To: Neurosarcoidosis

To: Neurosarcoidosis

Subject: NeuroSarcoid

Date: Thu, 25 May 2006 06:07:50 -0000

I am new to this site. I have had Neurosarcoidosis for several years.

Can no longer work. Have now developed nodules in the pericardium.

Overall, I think I have done well compared to some of you whose

messages I have read. I have been on many meds and reacted to most of

them so had to settle for old basic medications. I was on large doses

of prednisone for years. I have had nonhealing neuropathic ulcers on my

feet for the last 19 months now. I had my second surgery (Deep

debridement with graft) on May 19th. So they have now decreased the

prednisone. I am now non-weight bearing again.

I had the first procedure done in January (the wound had been debrided

in the office and treated at a wound clinic for 13 months. Since

January I have had two bouts of Cellulitis in my leg, one requiring

hospitalization. However aside from this I have done OK except I have

difficulty walking,of course.

It is good to know you are out there. God Bless Each Of You.

macleen500

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers,

and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database