RE: old? I don't think so.

[Guest guest]

Rose,

I use to say things like that

back, but it did no good, they just don’t get it!  The first time their brain

just shut down and they didn’t know where they were or what they would be

doing, they would maybe then get it!  WE’RE NOT OLD, I totally agree with

that! 

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of Rose

Sent: Saturday, May 27, 2006 3:31 PM

To: Neurosarcoidosis

Subject: old? I don't think so.

Marla, I'm really tired of hearing that

too. I'm only 57, and that's not old! People my age and older are

still teaching, practicing medicine, birthing babies, nursing, performing,

composing music, doing research, and so on. Why haven't THEIR brains gone

off into left field?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis

To: <Neurosarcoidosis >

Subject: RE: NeuroSarcoid

Date: Sat, 27 May 2006 14:29:04 -0600

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. Error!

Filename not specified. 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!

Error! Filename not specified.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]

Rose,

I use to say things like that

back, but it did no good, they just don’t get it!  The first time their brain

just shut down and they didn’t know where they were or what they would be

doing, they would maybe then get it!  WE’RE NOT OLD, I totally agree with

that! 

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of Rose

Sent: Saturday, May 27, 2006 3:31 PM

To: Neurosarcoidosis

Subject: old? I don't think so.

Marla, I'm really tired of hearing that

too. I'm only 57, and that's not old! People my age and older are

still teaching, practicing medicine, birthing babies, nursing, performing,

composing music, doing research, and so on. Why haven't THEIR brains gone

off into left field?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis

To: <Neurosarcoidosis >

Subject: RE: NeuroSarcoid

Date: Sat, 27 May 2006 14:29:04 -0600

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. Error!

Filename not specified. 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!

Error! Filename not specified.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]

Marla, Rose I gave up a long time ago. I am 64 now and I feel old. I don't know about all of you but I surmise that some of you are in the same boat as I am. I have had to give up my job and I never really thought I would stop working. I was a person who lived my life from a blueprint. Everything had a plan. I had goals back in the 1950's before the word goal was in our vocabulary. And my goal and my plan was not to be sitting here non-weightbearing for months. And not able to work even if I could walk. I intended to retire, but I was going to move about the country and work in different places until my husband and I had seen everthing to be seen there and then move on to another place. So, here we are. Sometimes telling stories that we told yesterday. hoping our family and friends understand. Trying to be courageous with chronic pain and frustrating symptoms. Living in a smaller world than we were used to. At least those who cannot drive or walk well

enough to be out of the house much. But on a lighter note. Someone said to another writer, "Maybe you will be the one to make it big". (while talking about Neurosarcoid) With all the prednisone we have taken, I'd think we've all made it big, we just have to make it famous now. Eileen Marla Bramer wrote: Rose, I use to say things like that back, but it did no good, they just don’t get it! The first time their brain just shut down and they didn’t know where they were or what they would be doing, they would maybe then get it! WE’RE NOT OLD, I totally

agree with that! Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Saturday, May 27, 2006 3:31 PMTo: Neurosarcoidosis Subject: old? I don't think so. Marla, I'm really tired of hearing that too. I'm only 57, and that's not old! People my age and older are still teaching, practicing

medicine, birthing babies, nursing, performing, composing music, doing research, and so on. Why haven't THEIR brains gone off into left field? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: RE: NeuroSarcoidDate: Sat, 27 May 2006 14:29:04 -0600 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 MacSent: Friday, May 26, 2006 11:56 AMTo:

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 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. Error!

Filename not specified. 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! Error! Filename not specified.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]

Rose, I just turned 50 in february and they tell me the same thing. All I can say is "sheep dip" - (you know the stuff they dip them in to get rid of bugs)///ConnieRose wrote: Marla, I'm really tired of hearing that too. I'm only 57, and that's not old! People my age and older are still teaching, practicing medicine, birthing babies, nursing, performing, composing music, doing research, and so on. Why haven't THEIR brains gone off into left field? Ramblin'

Rose Moderator Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: RE: NeuroSarcoidDate: Sat, 27 May 2006 14:29:04 -0600 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 MacSent: Friday, May 26, 2006 11:56 AMTo: 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 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]

Know what you mean Eileen...ConnieEileen Mac wrote: Marla, Rose I gave up a long time ago. I am 64 now and I feel old. I don't know about all of you but I surmise that some of you are in the same boat as I am. I have had to give up my job and I never really thought I would stop working. I was a person who lived my life from a blueprint. Everything had a plan. I had goals back in the 1950's before the word goal was in our vocabulary. And my goal and my plan was not to be sitting here non-weightbearing for months. And not able to work even if I could walk. I intended to retire, but I was going to move about the country and work in different places until my husband and I had seen everthing to be seen there and then move on to another place. So, here we are. Sometimes telling stories that we told

yesterday. hoping our family and friends understand. Trying to be courageous with chronic pain and frustrating symptoms. Living in a smaller world than we were used to. At least those who cannot drive or walk well enough to be out of the house much. But on a lighter note. Someone said to another writer, "Maybe you will be the one to make it big". (while talking about Neurosarcoid) With all the prednisone we have taken, I'd think we've all made it big, we just have to make it famous now. Eileen Marla Bramer wrote: Rose, I use to say things

like that back, but it did no good, they just don’t get it! The first time their brain just shut down and they didn’t know where they were or what they would be doing, they would maybe then get it! WE’RE NOT OLD, I totally agree with that! Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Saturday, May 27, 2006 3:31 PMTo: Neurosarcoidosis Subject: old? I don't think so.

Marla, I'm really tired of hearing that too. I'm only 57, and that's not old! People my age and older are still teaching, practicing medicine, birthing babies, nursing, performing, composing music, doing research, and so on. Why haven't THEIR brains gone off into left field? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: RE: NeuroSarcoidDate: Sat, 27 May 2006 14:29:04 -0600 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 MacSent: Friday, May 26, 2006 11:56 AMTo: 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 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. Error! Filename not specified. 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! Error! Filename not specified.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]

Know what you mean Eileen...ConnieEileen Mac wrote: Marla, Rose I gave up a long time ago. I am 64 now and I feel old. I don't know about all of you but I surmise that some of you are in the same boat as I am. I have had to give up my job and I never really thought I would stop working. I was a person who lived my life from a blueprint. Everything had a plan. I had goals back in the 1950's before the word goal was in our vocabulary. And my goal and my plan was not to be sitting here non-weightbearing for months. And not able to work even if I could walk. I intended to retire, but I was going to move about the country and work in different places until my husband and I had seen everthing to be seen there and then move on to another place. So, here we are. Sometimes telling stories that we told

yesterday. hoping our family and friends understand. Trying to be courageous with chronic pain and frustrating symptoms. Living in a smaller world than we were used to. At least those who cannot drive or walk well enough to be out of the house much. But on a lighter note. Someone said to another writer, "Maybe you will be the one to make it big". (while talking about Neurosarcoid) With all the prednisone we have taken, I'd think we've all made it big, we just have to make it famous now. Eileen Marla Bramer wrote: Rose, I use to say things

like that back, but it did no good, they just don’t get it! The first time their brain just shut down and they didn’t know where they were or what they would be doing, they would maybe then get it! WE’RE NOT OLD, I totally agree with that! Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Saturday, May 27, 2006 3:31 PMTo: Neurosarcoidosis Subject: old? I don't think so.

Marla, I'm really tired of hearing that too. I'm only 57, and that's not old! People my age and older are still teaching, practicing medicine, birthing babies, nursing, performing, composing music, doing research, and so on. Why haven't THEIR brains gone off into left field? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: RE: NeuroSarcoidDate: Sat, 27 May 2006 14:29:04 -0600 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 MacSent: Friday, May 26, 2006 11:56 AMTo: 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 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. Error! Filename not specified. 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! Error! Filename not specified.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