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Posted

Hey, Doc! This place is a hotbed for misdiagnosis, so I'm sure you will get

lots of replies. My problem was that all my symptoms were blamed on

viruses--hearing loss in both ears, facial palsy, extreme fatigue & muscle

weakness, weight loss. Oh, not all were blamed on a virus. My dry eyes

(sudden onset, intense itching) were blamed on " getting older. " Just

overnight--got that much older! Anyway, I'm 55, a nurse-midwife on

disability since last fall. Have pulmonary sarc, systemic & neuro sarc. By

the way, when I finally got sent to a neurologist because of tremors &

falling over, he did a bunch of tests which were basically negative, but

still believed I had NS. Of course, any of us who have researched this

disease know that the tests can all be normal. But when my family doctor (a

new one; not the virus guy) reviewed the results, he announced to me that

there was nothing wrong with me that diet & some exercise wouldn't cure! I

told him that I hadn't eaten right or exercised regularly for 20 years &

felt fine, until this abrupt change. Then he said that I probably thought

it was sudden, but it actually occurred over time, as I got older. I said,

" You don't even know me & you're telling me my medical history! My friends

& co-workers can tell you the DAY it started! " He made some snide remark &

he was history as far as I was concerned. He left the practice shortly

after that, so I wasn't the only one who thought he was an idiot.

Anyway, I've had the systemic symptoms (fatigue, weakness, etc.) for 4

years, slowly worsening. I've not had any remissions that I've noticed.

I've been on Pred & Imuran, but I saw a specialist at Indiana U. Med. Ctr.

who wants to get me off them, re-evaluate ACE, MRI, maybe another spinal

tap, then look at other treatment options, since I've not improved. There's

a possibility the drugs, esp. the Pred., have made me worse.

Anyway, that's a bit of my story. Welcome to the site. It's a great place

for info, support, a safe place to whine & vent, ask any questions. Rose

from Indiana

new member

> Hi

> I just joined today so I thought I would say hi to everyone. please

> excuse the yahoo name " Drdoom " it is my sons. He loves comic books

> although I have met several doctors over the past year that would fit

> that name also. I was diagnosed with neurosarcoidosis one year ago.

> It was a nightmare of a misdiagnosis and changing doctors, multiple

> hospitalizations and cranial nerve palsys, double vision and

> everything that goes with neurosarcoidosis. I currently have a great

> neuro doctor who I am forever greatful in helping me. I currently

> still take prednisone (which I really really hate) and I also take

> Immuron as an imune suppressor . I would really like to hear from

> others with this disease as I do not know a single person with it.

> My aunt has sarcoidosis in her lungs but no neuro. I have had

> several bouts of headaches that last weeks and then go away. Anyone

> else had that? Of course the last time I had an MRI to be sure and

> it was just a side effect headache thank goodness. My neuro was

> diagnosed through symptoms, MRI and spinal taps. Love that

> angiotension enzyme. I find it hard to believe how many diagnostic

> tests a person can undergo in a few days. I had 4 CT scans, 4 MRI, 1

> spinal tap, 1 bone scan, 1 angiogram and a chest x ray. Followed

> three weeks later by more MRI and another spinal tap. I must have

> donated at least 2 gallons of blood to the lab.

>

> I would love to hear from fellow mis-diagnosed patients. (My orignal

> family physician told me I was just fat and had high blood pressure

> and neck and back pain from my weight). Of course I fired him since

> it ended up I had meningitis and vasculitis.

>

> Anyway I seem to be rambling. Would love to hear from anyone out

> there. Is everyone in some type of remission or has anyone had

> reoccurrance of symptoms?

>

> Thanks

>

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php

>

> 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

>

>

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Guest guest   

Guest guest
Posted

Hey, Doc! This place is a hotbed for misdiagnosis, so I'm sure you will get

lots of replies. My problem was that all my symptoms were blamed on

viruses--hearing loss in both ears, facial palsy, extreme fatigue & muscle

weakness, weight loss. Oh, not all were blamed on a virus. My dry eyes

(sudden onset, intense itching) were blamed on " getting older. " Just

overnight--got that much older! Anyway, I'm 55, a nurse-midwife on

disability since last fall. Have pulmonary sarc, systemic & neuro sarc. By

the way, when I finally got sent to a neurologist because of tremors &

falling over, he did a bunch of tests which were basically negative, but

still believed I had NS. Of course, any of us who have researched this

disease know that the tests can all be normal. But when my family doctor (a

new one; not the virus guy) reviewed the results, he announced to me that

there was nothing wrong with me that diet & some exercise wouldn't cure! I

told him that I hadn't eaten right or exercised regularly for 20 years &

felt fine, until this abrupt change. Then he said that I probably thought

it was sudden, but it actually occurred over time, as I got older. I said,

" You don't even know me & you're telling me my medical history! My friends

& co-workers can tell you the DAY it started! " He made some snide remark &

he was history as far as I was concerned. He left the practice shortly

after that, so I wasn't the only one who thought he was an idiot.

Anyway, I've had the systemic symptoms (fatigue, weakness, etc.) for 4

years, slowly worsening. I've not had any remissions that I've noticed.

I've been on Pred & Imuran, but I saw a specialist at Indiana U. Med. Ctr.

who wants to get me off them, re-evaluate ACE, MRI, maybe another spinal

tap, then look at other treatment options, since I've not improved. There's

a possibility the drugs, esp. the Pred., have made me worse.

Anyway, that's a bit of my story. Welcome to the site. It's a great place

for info, support, a safe place to whine & vent, ask any questions. Rose

from Indiana

new member

> Hi

> I just joined today so I thought I would say hi to everyone. please

> excuse the yahoo name " Drdoom " it is my sons. He loves comic books

> although I have met several doctors over the past year that would fit

> that name also. I was diagnosed with neurosarcoidosis one year ago.

> It was a nightmare of a misdiagnosis and changing doctors, multiple

> hospitalizations and cranial nerve palsys, double vision and

> everything that goes with neurosarcoidosis. I currently have a great

> neuro doctor who I am forever greatful in helping me. I currently

> still take prednisone (which I really really hate) and I also take

> Immuron as an imune suppressor . I would really like to hear from

> others with this disease as I do not know a single person with it.

> My aunt has sarcoidosis in her lungs but no neuro. I have had

> several bouts of headaches that last weeks and then go away. Anyone

> else had that? Of course the last time I had an MRI to be sure and

> it was just a side effect headache thank goodness. My neuro was

> diagnosed through symptoms, MRI and spinal taps. Love that

> angiotension enzyme. I find it hard to believe how many diagnostic

> tests a person can undergo in a few days. I had 4 CT scans, 4 MRI, 1

> spinal tap, 1 bone scan, 1 angiogram and a chest x ray. Followed

> three weeks later by more MRI and another spinal tap. I must have

> donated at least 2 gallons of blood to the lab.

>

> I would love to hear from fellow mis-diagnosed patients. (My orignal

> family physician told me I was just fat and had high blood pressure

> and neck and back pain from my weight). Of course I fired him since

> it ended up I had meningitis and vasculitis.

>

> Anyway I seem to be rambling. Would love to hear from anyone out

> there. Is everyone in some type of remission or has anyone had

> reoccurrance of symptoms?

>

> Thanks

>

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php

>

> 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

>

>

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Guest guest
Posted

RoseThanks so much for sharing your story. NS must require that you be mis-diagnosed at least once. I cannot believe how many family doctors just brush people off and tell them its their age etc. Unfortunately and fortunately I also work in the health field. I am a supervisor in the Radiology department of our local hospital. This has been a blessing. My illness started just over a year ago in May 2003. I started out with terrible back pain in my upper back and scapula. I was literally laying on ice bags on my floor and vicodin did not even touch it. My family doctor who I have swore by for 10 years was completely ignoring me and telling me my new high blood pressure and all this pain was my weight, my age and every other stupid excuse that made no sense. Just like you I was saying well..... I weighed this much last year and my blood pressure was normal and I was not in pain...... His reply was "well you are older

now and can't get away with it". I could have shot him. After 10 days of this I was in our ER and the doctor in there even told my doctor there had to be something more going on and I needed testing. He instructed ER to send me home and refer me to Physical therapy. That was it!!! I fired him and made an appointment with his x-partner who had just left his practice a few months earlier. This was great because my NEW doctor loved to hear me complain and bash the OLD doctor. Unfortunately he could not help me either, but at least was trying. Unfortunately/fortunately I woke up 2 days later with double vision and could not get out of bed. This time ER thought I had a stroke or MS. MRI confirmed I simply had massive meninitis and vasculitis. After 10 days of IV steroids I was sent home by another stupid Neuro doctor and told to see him in two weeks - he promptly left the country on vacation leaving me alone with

only my new family doctor to save me. Within a week I was terribly ill - I could not focus, still had double vision and had slurred speech. Thank god one of the radiologists I work with had been keeping track of me during all this and threw a fit with my family dr to re-order the MRIs and get me to a major medical center where they could help me. Small hospitals do not see this stuff and just don't know what to do with it. This lead me to my current neuro-ophthalmologist at the OSF medical center. He was with me 20 minutes and had only looked at my charts and x rays and said "you have neurosarcoidosis" I was in complete denial. No way. My lungs were clear on the CT. Then I found out the sarcoid had only affected my nervous system - lucky me only my brain and vision. After another 2 weeks on IV steroids in the hospital I was released home on 80 mg of prednisone a day which I decided very quickly

was worse than the sarcoid. I broke out in acne which I did not even have as a teen, swelled up like a balloon- I swear I lost my neck- and felt like my heart was going to bounce right out of my chest all day. I only slept 2 hours at a time if I was lucky. It took 6 more additional weeks of this therapy for my double vision to finally go away.

I am still lowering my prednisone and on imuran. Am currently on my second bout of headaches that seem to last forever. The last one lasted a month. This is only day 5 this time.

Rose please let me know if your doc in Indiana changes your drugs to a different treatment. I would love to get off prednisone. The imuran I can take or leave. So far it has not bothered me. Has anyone else been on imuran long long term? I have only taken it about a year.

At one point they discussed me going to the Mayo Clinic in Minnisota. I decided to trust the neuro I have and not take the long trip. Has anyone else been to the Mayo clinic. I have always wondered if I would have received different advise from them.

Thanks again for sharing you stories. I makes me feel like I am not the only person on the face of the planet dealing with doctors and a disease that no one else has ever heard of.

M.

(drdoom)( I really have to stop using my sons yahoo account- that name drives me crazy).

Rose wrote: Hey, Doc! This place is a hotbed for misdiagnosis, so I'm sure you will getlots of replies. My problem was that all my symptoms were blamed onviruses--hearing loss in both ears, facial palsy, extreme fatigue & muscleweakness, weight loss. Oh, not all were blamed on a virus. My dry eyes(sudden onset, intense itching) were blamed on "getting older." Justovernight--got that much older! Anyway, I'm 55, a nurse-midwife ondisability since last fall. Have pulmonary sarc, systemic & neuro sarc. Bythe way, when I finally got sent to a neurologist because of tremors & falling over, he did a bunch of tests which were basically negative, butstill believed I had NS. Of course, any of us who have researched thisdisease know that the tests can all be normal. But when my family doctor

(anew one; not the virus guy) reviewed the results, he announced to me thatthere was nothing wrong with me that diet & some exercise wouldn't cure! Itold him that I hadn't eaten right or exercised regularly for 20 years & felt fine, until this abrupt change. Then he said that I probably thoughtit was sudden, but it actually occurred over time, as I got older. I said,"You don't even know me & you're telling me my medical history! My friends & co-workers can tell you the DAY it started!" He made some snide remark & he was history as far as I was concerned. He left the practice shortlyafter that, so I wasn't the only one who thought he was an idiot.Anyway, I've had the systemic symptoms (fatigue, weakness, etc.) for 4years, slowly worsening. I've not had any remissions that I've noticed.I've been on Pred & Imuran, but I saw a specialist at Indiana U. Med. Ctr.who wants

to get me off them, re-evaluate ACE, MRI, maybe another spinaltap, then look at other treatment options, since I've not improved. There'sa possibility the drugs, esp. the Pred., have made me worse.Anyway, that's a bit of my story. Welcome to the site. It's a great placefor info, support, a safe place to whine & vent, ask any questions. Rosefrom Indiana new member> Hi> I just joined today so I thought I would say hi to everyone. please> excuse the yahoo name "Drdoom" it is my sons. He loves comic books> although I have met several doctors over the past year that would fit> that name also. I was diagnosed with neurosarcoidosis one year ago.> It was a nightmare of

a misdiagnosis and changing doctors, multiple> hospitalizations and cranial nerve palsys, double vision and> everything that goes with neurosarcoidosis. I currently have a great> neuro doctor who I am forever greatful in helping me. I currently> still take prednisone (which I really really hate) and I also take> Immuron as an imune suppressor . I would really like to hear from> others with this disease as I do not know a single person with it.> My aunt has sarcoidosis in her lungs but no neuro. I have had> several bouts of headaches that last weeks and then go away. Anyone> else had that? Of course the last time I had an MRI to be sure and> it was just a side effect headache thank goodness. My neuro was> diagnosed through symptoms, MRI and spinal taps. Love that> angiotension enzyme. I find it hard to believe how many diagnostic> tests a person can undergo

in a few days. I had 4 CT scans, 4 MRI, 1> spinal tap, 1 bone scan, 1 angiogram and a chest x ray. Followed> three weeks later by more MRI and another spinal tap. I must have> donated at least 2 gallons of blood to the lab.>> I would love to hear from fellow mis-diagnosed patients. (My orignal> family physician told me I was just fat and had high blood pressure> and neck and back pain from my weight). Of course I fired him since> it ended up I had meningitis and vasculitis.>> Anyway I seem to be rambling. Would love to hear from anyone out> there. Is everyone in some type of remission or has anyone had> reoccurrance of symptoms?>> Thanks>>>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> Live Group Chat:-> Mondays & Fridays 10pm EST USA> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php>> 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>>

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RoseThanks so much for sharing your story. NS must require that you be mis-diagnosed at least once. I cannot believe how many family doctors just brush people off and tell them its their age etc. Unfortunately and fortunately I also work in the health field. I am a supervisor in the Radiology department of our local hospital. This has been a blessing. My illness started just over a year ago in May 2003. I started out with terrible back pain in my upper back and scapula. I was literally laying on ice bags on my floor and vicodin did not even touch it. My family doctor who I have swore by for 10 years was completely ignoring me and telling me my new high blood pressure and all this pain was my weight, my age and every other stupid excuse that made no sense. Just like you I was saying well..... I weighed this much last year and my blood pressure was normal and I was not in pain...... His reply was "well you are older

now and can't get away with it". I could have shot him. After 10 days of this I was in our ER and the doctor in there even told my doctor there had to be something more going on and I needed testing. He instructed ER to send me home and refer me to Physical therapy. That was it!!! I fired him and made an appointment with his x-partner who had just left his practice a few months earlier. This was great because my NEW doctor loved to hear me complain and bash the OLD doctor. Unfortunately he could not help me either, but at least was trying. Unfortunately/fortunately I woke up 2 days later with double vision and could not get out of bed. This time ER thought I had a stroke or MS. MRI confirmed I simply had massive meninitis and vasculitis. After 10 days of IV steroids I was sent home by another stupid Neuro doctor and told to see him in two weeks - he promptly left the country on vacation leaving me alone with

only my new family doctor to save me. Within a week I was terribly ill - I could not focus, still had double vision and had slurred speech. Thank god one of the radiologists I work with had been keeping track of me during all this and threw a fit with my family dr to re-order the MRIs and get me to a major medical center where they could help me. Small hospitals do not see this stuff and just don't know what to do with it. This lead me to my current neuro-ophthalmologist at the OSF medical center. He was with me 20 minutes and had only looked at my charts and x rays and said "you have neurosarcoidosis" I was in complete denial. No way. My lungs were clear on the CT. Then I found out the sarcoid had only affected my nervous system - lucky me only my brain and vision. After another 2 weeks on IV steroids in the hospital I was released home on 80 mg of prednisone a day which I decided very quickly

was worse than the sarcoid. I broke out in acne which I did not even have as a teen, swelled up like a balloon- I swear I lost my neck- and felt like my heart was going to bounce right out of my chest all day. I only slept 2 hours at a time if I was lucky. It took 6 more additional weeks of this therapy for my double vision to finally go away.

I am still lowering my prednisone and on imuran. Am currently on my second bout of headaches that seem to last forever. The last one lasted a month. This is only day 5 this time.

Rose please let me know if your doc in Indiana changes your drugs to a different treatment. I would love to get off prednisone. The imuran I can take or leave. So far it has not bothered me. Has anyone else been on imuran long long term? I have only taken it about a year.

At one point they discussed me going to the Mayo Clinic in Minnisota. I decided to trust the neuro I have and not take the long trip. Has anyone else been to the Mayo clinic. I have always wondered if I would have received different advise from them.

Thanks again for sharing you stories. I makes me feel like I am not the only person on the face of the planet dealing with doctors and a disease that no one else has ever heard of.

M.

(drdoom)( I really have to stop using my sons yahoo account- that name drives me crazy).

Rose wrote: Hey, Doc! This place is a hotbed for misdiagnosis, so I'm sure you will getlots of replies. My problem was that all my symptoms were blamed onviruses--hearing loss in both ears, facial palsy, extreme fatigue & muscleweakness, weight loss. Oh, not all were blamed on a virus. My dry eyes(sudden onset, intense itching) were blamed on "getting older." Justovernight--got that much older! Anyway, I'm 55, a nurse-midwife ondisability since last fall. Have pulmonary sarc, systemic & neuro sarc. Bythe way, when I finally got sent to a neurologist because of tremors & falling over, he did a bunch of tests which were basically negative, butstill believed I had NS. Of course, any of us who have researched thisdisease know that the tests can all be normal. But when my family doctor

(anew one; not the virus guy) reviewed the results, he announced to me thatthere was nothing wrong with me that diet & some exercise wouldn't cure! Itold him that I hadn't eaten right or exercised regularly for 20 years & felt fine, until this abrupt change. Then he said that I probably thoughtit was sudden, but it actually occurred over time, as I got older. I said,"You don't even know me & you're telling me my medical history! My friends & co-workers can tell you the DAY it started!" He made some snide remark & he was history as far as I was concerned. He left the practice shortlyafter that, so I wasn't the only one who thought he was an idiot.Anyway, I've had the systemic symptoms (fatigue, weakness, etc.) for 4years, slowly worsening. I've not had any remissions that I've noticed.I've been on Pred & Imuran, but I saw a specialist at Indiana U. Med. Ctr.who wants

to get me off them, re-evaluate ACE, MRI, maybe another spinaltap, then look at other treatment options, since I've not improved. There'sa possibility the drugs, esp. the Pred., have made me worse.Anyway, that's a bit of my story. Welcome to the site. It's a great placefor info, support, a safe place to whine & vent, ask any questions. Rosefrom Indiana new member> Hi> I just joined today so I thought I would say hi to everyone. please> excuse the yahoo name "Drdoom" it is my sons. He loves comic books> although I have met several doctors over the past year that would fit> that name also. I was diagnosed with neurosarcoidosis one year ago.> It was a nightmare of

a misdiagnosis and changing doctors, multiple> hospitalizations and cranial nerve palsys, double vision and> everything that goes with neurosarcoidosis. I currently have a great> neuro doctor who I am forever greatful in helping me. I currently> still take prednisone (which I really really hate) and I also take> Immuron as an imune suppressor . I would really like to hear from> others with this disease as I do not know a single person with it.> My aunt has sarcoidosis in her lungs but no neuro. I have had> several bouts of headaches that last weeks and then go away. Anyone> else had that? Of course the last time I had an MRI to be sure and> it was just a side effect headache thank goodness. My neuro was> diagnosed through symptoms, MRI and spinal taps. Love that> angiotension enzyme. I find it hard to believe how many diagnostic> tests a person can undergo

in a few days. I had 4 CT scans, 4 MRI, 1> spinal tap, 1 bone scan, 1 angiogram and a chest x ray. Followed> three weeks later by more MRI and another spinal tap. I must have> donated at least 2 gallons of blood to the lab.>> I would love to hear from fellow mis-diagnosed patients. (My orignal> family physician told me I was just fat and had high blood pressure> and neck and back pain from my weight). Of course I fired him since> it ended up I had meningitis and vasculitis.>> Anyway I seem to be rambling. Would love to hear from anyone out> there. Is everyone in some type of remission or has anyone had> reoccurrance of symptoms?>> Thanks>>>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> Live Group Chat:-> Mondays & Fridays 10pm EST USA> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php>> 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>>

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Posted

RoseThanks so much for sharing your story. NS must require that you be mis-diagnosed at least once. I cannot believe how many family doctors just brush people off and tell them its their age etc. Unfortunately and fortunately I also work in the health field. I am a supervisor in the Radiology department of our local hospital. This has been a blessing. My illness started just over a year ago in May 2003. I started out with terrible back pain in my upper back and scapula. I was literally laying on ice bags on my floor and vicodin did not even touch it. My family doctor who I have swore by for 10 years was completely ignoring me and telling me my new high blood pressure and all this pain was my weight, my age and every other stupid excuse that made no sense. Just like you I was saying well..... I weighed this much last year and my blood pressure was normal and I was not in pain...... His reply was "well you are older

now and can't get away with it". I could have shot him. After 10 days of this I was in our ER and the doctor in there even told my doctor there had to be something more going on and I needed testing. He instructed ER to send me home and refer me to Physical therapy. That was it!!! I fired him and made an appointment with his x-partner who had just left his practice a few months earlier. This was great because my NEW doctor loved to hear me complain and bash the OLD doctor. Unfortunately he could not help me either, but at least was trying. Unfortunately/fortunately I woke up 2 days later with double vision and could not get out of bed. This time ER thought I had a stroke or MS. MRI confirmed I simply had massive meninitis and vasculitis. After 10 days of IV steroids I was sent home by another stupid Neuro doctor and told to see him in two weeks - he promptly left the country on vacation leaving me alone with

only my new family doctor to save me. Within a week I was terribly ill - I could not focus, still had double vision and had slurred speech. Thank god one of the radiologists I work with had been keeping track of me during all this and threw a fit with my family dr to re-order the MRIs and get me to a major medical center where they could help me. Small hospitals do not see this stuff and just don't know what to do with it. This lead me to my current neuro-ophthalmologist at the OSF medical center. He was with me 20 minutes and had only looked at my charts and x rays and said "you have neurosarcoidosis" I was in complete denial. No way. My lungs were clear on the CT. Then I found out the sarcoid had only affected my nervous system - lucky me only my brain and vision. After another 2 weeks on IV steroids in the hospital I was released home on 80 mg of prednisone a day which I decided very quickly

was worse than the sarcoid. I broke out in acne which I did not even have as a teen, swelled up like a balloon- I swear I lost my neck- and felt like my heart was going to bounce right out of my chest all day. I only slept 2 hours at a time if I was lucky. It took 6 more additional weeks of this therapy for my double vision to finally go away.

I am still lowering my prednisone and on imuran. Am currently on my second bout of headaches that seem to last forever. The last one lasted a month. This is only day 5 this time.

Rose please let me know if your doc in Indiana changes your drugs to a different treatment. I would love to get off prednisone. The imuran I can take or leave. So far it has not bothered me. Has anyone else been on imuran long long term? I have only taken it about a year.

At one point they discussed me going to the Mayo Clinic in Minnisota. I decided to trust the neuro I have and not take the long trip. Has anyone else been to the Mayo clinic. I have always wondered if I would have received different advise from them.

Thanks again for sharing you stories. I makes me feel like I am not the only person on the face of the planet dealing with doctors and a disease that no one else has ever heard of.

M.

(drdoom)( I really have to stop using my sons yahoo account- that name drives me crazy).

Rose wrote: Hey, Doc! This place is a hotbed for misdiagnosis, so I'm sure you will getlots of replies. My problem was that all my symptoms were blamed onviruses--hearing loss in both ears, facial palsy, extreme fatigue & muscleweakness, weight loss. Oh, not all were blamed on a virus. My dry eyes(sudden onset, intense itching) were blamed on "getting older." Justovernight--got that much older! Anyway, I'm 55, a nurse-midwife ondisability since last fall. Have pulmonary sarc, systemic & neuro sarc. Bythe way, when I finally got sent to a neurologist because of tremors & falling over, he did a bunch of tests which were basically negative, butstill believed I had NS. Of course, any of us who have researched thisdisease know that the tests can all be normal. But when my family doctor

(anew one; not the virus guy) reviewed the results, he announced to me thatthere was nothing wrong with me that diet & some exercise wouldn't cure! Itold him that I hadn't eaten right or exercised regularly for 20 years & felt fine, until this abrupt change. Then he said that I probably thoughtit was sudden, but it actually occurred over time, as I got older. I said,"You don't even know me & you're telling me my medical history! My friends & co-workers can tell you the DAY it started!" He made some snide remark & he was history as far as I was concerned. He left the practice shortlyafter that, so I wasn't the only one who thought he was an idiot.Anyway, I've had the systemic symptoms (fatigue, weakness, etc.) for 4years, slowly worsening. I've not had any remissions that I've noticed.I've been on Pred & Imuran, but I saw a specialist at Indiana U. Med. Ctr.who wants

to get me off them, re-evaluate ACE, MRI, maybe another spinaltap, then look at other treatment options, since I've not improved. There'sa possibility the drugs, esp. the Pred., have made me worse.Anyway, that's a bit of my story. Welcome to the site. It's a great placefor info, support, a safe place to whine & vent, ask any questions. Rosefrom Indiana new member> Hi> I just joined today so I thought I would say hi to everyone. please> excuse the yahoo name "Drdoom" it is my sons. He loves comic books> although I have met several doctors over the past year that would fit> that name also. I was diagnosed with neurosarcoidosis one year ago.> It was a nightmare of

a misdiagnosis and changing doctors, multiple> hospitalizations and cranial nerve palsys, double vision and> everything that goes with neurosarcoidosis. I currently have a great> neuro doctor who I am forever greatful in helping me. I currently> still take prednisone (which I really really hate) and I also take> Immuron as an imune suppressor . I would really like to hear from> others with this disease as I do not know a single person with it.> My aunt has sarcoidosis in her lungs but no neuro. I have had> several bouts of headaches that last weeks and then go away. Anyone> else had that? Of course the last time I had an MRI to be sure and> it was just a side effect headache thank goodness. My neuro was> diagnosed through symptoms, MRI and spinal taps. Love that> angiotension enzyme. I find it hard to believe how many diagnostic> tests a person can undergo

in a few days. I had 4 CT scans, 4 MRI, 1> spinal tap, 1 bone scan, 1 angiogram and a chest x ray. Followed> three weeks later by more MRI and another spinal tap. I must have> donated at least 2 gallons of blood to the lab.>> I would love to hear from fellow mis-diagnosed patients. (My orignal> family physician told me I was just fat and had high blood pressure> and neck and back pain from my weight). Of course I fired him since> it ended up I had meningitis and vasculitis.>> Anyway I seem to be rambling. Would love to hear from anyone out> there. Is everyone in some type of remission or has anyone had> reoccurrance of symptoms?>> Thanks>>>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> Live Group Chat:-> Mondays & Fridays 10pm EST USA> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php>> 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>>

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anna

Thanks for the reply. Sorry to hear you have headaches too. Have you found any meds that work? I pop tylenol like its candy. I have vicadin but try to not take it.

M (drdoom)

iiii@... wrote: Welcome to the group, I have had neuro sar since 1999. I also have really bad headaches. My Dr. says that goes along with the monster type disease. Anyway just wanted to say hi and if you have any questions just let me know. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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anna

Thanks for the reply. Sorry to hear you have headaches too. Have you found any meds that work? I pop tylenol like its candy. I have vicadin but try to not take it.

M (drdoom)

iiii@... wrote: Welcome to the group, I have had neuro sar since 1999. I also have really bad headaches. My Dr. says that goes along with the monster type disease. Anyway just wanted to say hi and if you have any questions just let me know. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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anna

Thanks for the reply. Sorry to hear you have headaches too. Have you found any meds that work? I pop tylenol like its candy. I have vicadin but try to not take it.

M (drdoom)

iiii@... wrote: Welcome to the group, I have had neuro sar since 1999. I also have really bad headaches. My Dr. says that goes along with the monster type disease. Anyway just wanted to say hi and if you have any questions just let me know. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Hi there my name is Jan I have had sarc since 1990 it was just primarily in my lungs in the beginning then I went into remission in 1994 and it was great then in 2001 it came back with a vengance with chronic fatigue and pain like you wouldn't believe and headaches out of this world the docs were treating them as migraines and I thought they were bad, horrible migraines that lasted weeks at a time them I had told the docs about my sarc diagnosis but that I had been in remission then they started treating me with pred high doses and i was having non stop bronchitis and just multi symptoms then finally the doc s said it was back and was systemic and I was put on a ton of meds and was given a ton of test, most of them normal which led some docs to believe that it was just depression but I knew better cause I was having the time of my life before this thing hit me and it hit all of a sudden.

I went to see a neuro because of all the headaches and memory problems they did a psych test and MRI"S and CT scans and Spinal tap to check for MS and lupus and various stuff and they basically said I had systemic sarc them they found I had a herniated cervical disc at c-5,6 level that really needed surgery but that my medical condition was very unstable and so I still have that herniated disc and have peripheal neuropathy and i'm on a lot of meds for the neuro pain as well as i'm off all pred and the docs finally put me on an immunosuppressant called methotrexate after I had a bout with pancreatitis and now I still have one flare after another and I'm so glad I found this site it has given me a world of info and the people here are great you can come here to vent, whine and just plain have fun too.

Well I have rambled on long enough if you ever want to talk please feel free to do so i'm here as often as my condition will allow. I'm sorry you are sick but you are at the right place and once again welcome...........

Much love,hugs,support,and prayers,

Jan

Faith makes all things possible,Hope makes all things bright,Love makes all things easy.............

Jan.......

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Hi there my name is Jan I have had sarc since 1990 it was just primarily in my lungs in the beginning then I went into remission in 1994 and it was great then in 2001 it came back with a vengance with chronic fatigue and pain like you wouldn't believe and headaches out of this world the docs were treating them as migraines and I thought they were bad, horrible migraines that lasted weeks at a time them I had told the docs about my sarc diagnosis but that I had been in remission then they started treating me with pred high doses and i was having non stop bronchitis and just multi symptoms then finally the doc s said it was back and was systemic and I was put on a ton of meds and was given a ton of test, most of them normal which led some docs to believe that it was just depression but I knew better cause I was having the time of my life before this thing hit me and it hit all of a sudden.

I went to see a neuro because of all the headaches and memory problems they did a psych test and MRI"S and CT scans and Spinal tap to check for MS and lupus and various stuff and they basically said I had systemic sarc them they found I had a herniated cervical disc at c-5,6 level that really needed surgery but that my medical condition was very unstable and so I still have that herniated disc and have peripheal neuropathy and i'm on a lot of meds for the neuro pain as well as i'm off all pred and the docs finally put me on an immunosuppressant called methotrexate after I had a bout with pancreatitis and now I still have one flare after another and I'm so glad I found this site it has given me a world of info and the people here are great you can come here to vent, whine and just plain have fun too.

Well I have rambled on long enough if you ever want to talk please feel free to do so i'm here as often as my condition will allow. I'm sorry you are sick but you are at the right place and once again welcome...........

Much love,hugs,support,and prayers,

Jan

Faith makes all things possible,Hope makes all things bright,Love makes all things easy.............

Jan.......

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Hi there my name is Jan I have had sarc since 1990 it was just primarily in my lungs in the beginning then I went into remission in 1994 and it was great then in 2001 it came back with a vengance with chronic fatigue and pain like you wouldn't believe and headaches out of this world the docs were treating them as migraines and I thought they were bad, horrible migraines that lasted weeks at a time them I had told the docs about my sarc diagnosis but that I had been in remission then they started treating me with pred high doses and i was having non stop bronchitis and just multi symptoms then finally the doc s said it was back and was systemic and I was put on a ton of meds and was given a ton of test, most of them normal which led some docs to believe that it was just depression but I knew better cause I was having the time of my life before this thing hit me and it hit all of a sudden.

I went to see a neuro because of all the headaches and memory problems they did a psych test and MRI"S and CT scans and Spinal tap to check for MS and lupus and various stuff and they basically said I had systemic sarc them they found I had a herniated cervical disc at c-5,6 level that really needed surgery but that my medical condition was very unstable and so I still have that herniated disc and have peripheal neuropathy and i'm on a lot of meds for the neuro pain as well as i'm off all pred and the docs finally put me on an immunosuppressant called methotrexate after I had a bout with pancreatitis and now I still have one flare after another and I'm so glad I found this site it has given me a world of info and the people here are great you can come here to vent, whine and just plain have fun too.

Well I have rambled on long enough if you ever want to talk please feel free to do so i'm here as often as my condition will allow. I'm sorry you are sick but you are at the right place and once again welcome...........

Much love,hugs,support,and prayers,

Jan

Faith makes all things possible,Hope makes all things bright,Love makes all things easy.............

Jan.......

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anna

Thanks for the reply. Sorry to hear you have headaches too. Have you found any meds that work? I pop tylenol like its candy. I have vicadin but try to not take it.

M (drdoom)

Hi ,

I take a lot of tylenol but it doesn't seem to help much. When they are really bad I have to bring in the strong stuff to help. I take percocet and that does help. It also help out with my pain in my body. I have never taken vicadin is that better than percocet? I also have two herniated disc and I take it for that. I try not to take too many because I don't want my body to build up a tolerant for them. The disease is a pain in the butt, but you can live with it, you just have to change your lifestyle and make the best of what you can do.

Love to ya,

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Hi

You are lucky you have a diagnosis, I am still waiting, for a diagnosis. I

too had the double vision, facial palsy, headaches, balance problems, etc

etc. and still do from time to time. I have had the mri's, spinal tap,

blood tests, x-rays and every other test they can think of and am still

having them. I have all the systemic things like the incredible fatigue,

the pain, the weakness, etc. Myself, like most all of here have been

misdiagnosed, from virus to fibromyalgia, you name it they've said it and

believe me it isn't just at least once. I am currently on plaquenil,

prednisone 30mg daily, everytime I try to slowly reduce by 5mg every second

day it is only a matter of days and I regress and get sick again so go back

up to the thirty. I desperately want to get of prednisons as I HATE IT

HATE IT HATE IT but I hate how I feel when I am not taking it and don't

know if I could cope with that.

Responding to Roll Call, present

To the rest of the sarcoid family, I have yet AGAIN been rejected my social

security disability and am a bit down about that. It seems the crux of the

issue with them is that because there hasn't been a definitive diagnosis

because the drs are too gutless to put their name to a diagnosis but are

treating me for neuro none the less, my condition is classed as temporary

because I am still undergoing treatment and diagnosis and the outcome is

unknown. I can't believe these friggin idiots who sit behind these desks

and make these decisions about my shit of a life. grrrrrrrr!!!!!!!!!!!!!

Hi ,

I would dearly love to chat but every week when the time comes around I

forget the bloody time difference here in OZ and miss it everytime, damn

it. One of these days I'm going to set the bloody alarm on the clock and

make sure I get in there :)

Hey Rose and Jan,

Boy when I read your posts, it just hit me like a bullet how similar all

our stories with dr's and our trials and tribulations with them is. The

misdiagnoses, the bullshit put downs, and everything else. Just incredible

isn't it. Jan, congratulations on your good news, my prayers and good

thoughts are with you all for everything to be alright.

Hi

Just read your post about the Humira, we have just had an article about it

here on OZ tv show and I was wondering if it would do us any good. They

said something about using it with methotrexate. Seeing as you are having

your second shot, how is it working for you as I might ask my rheumy about

it when I see him in a couple of weeks. It has just been released on the

Prescribed Benefits Scheme here and they are calling it a wonder drug for

rheumatoid arthritis sufferers. Have just read your second post dedicated

to the newbies, I loved it, stirred my mind and emotions and started me

thinking way back to when I was well and how wonderful my life was and how

I had just gone on holidays from my job when I was hit with the monster out

of the blue. You are truly an Angel, . Your words are inspiring to

us all even though we are all sick and tired of being sick.

There is one question I wanted to post to the list in general, that is, can

you advise when you take your NS meds, like the plaquenil and prednisone.

Do you find there is a better time of day or night to take it?

Love and healing thoughts to the whole sarc family,

Toni

Brisbane, OZ

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.714 / Virus Database: 470 - Release Date: 2/07/2004

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Posted

Hi

You are lucky you have a diagnosis, I am still waiting, for a diagnosis. I

too had the double vision, facial palsy, headaches, balance problems, etc

etc. and still do from time to time. I have had the mri's, spinal tap,

blood tests, x-rays and every other test they can think of and am still

having them. I have all the systemic things like the incredible fatigue,

the pain, the weakness, etc. Myself, like most all of here have been

misdiagnosed, from virus to fibromyalgia, you name it they've said it and

believe me it isn't just at least once. I am currently on plaquenil,

prednisone 30mg daily, everytime I try to slowly reduce by 5mg every second

day it is only a matter of days and I regress and get sick again so go back

up to the thirty. I desperately want to get of prednisons as I HATE IT

HATE IT HATE IT but I hate how I feel when I am not taking it and don't

know if I could cope with that.

Responding to Roll Call, present

To the rest of the sarcoid family, I have yet AGAIN been rejected my social

security disability and am a bit down about that. It seems the crux of the

issue with them is that because there hasn't been a definitive diagnosis

because the drs are too gutless to put their name to a diagnosis but are

treating me for neuro none the less, my condition is classed as temporary

because I am still undergoing treatment and diagnosis and the outcome is

unknown. I can't believe these friggin idiots who sit behind these desks

and make these decisions about my shit of a life. grrrrrrrr!!!!!!!!!!!!!

Hi ,

I would dearly love to chat but every week when the time comes around I

forget the bloody time difference here in OZ and miss it everytime, damn

it. One of these days I'm going to set the bloody alarm on the clock and

make sure I get in there :)

Hey Rose and Jan,

Boy when I read your posts, it just hit me like a bullet how similar all

our stories with dr's and our trials and tribulations with them is. The

misdiagnoses, the bullshit put downs, and everything else. Just incredible

isn't it. Jan, congratulations on your good news, my prayers and good

thoughts are with you all for everything to be alright.

Hi

Just read your post about the Humira, we have just had an article about it

here on OZ tv show and I was wondering if it would do us any good. They

said something about using it with methotrexate. Seeing as you are having

your second shot, how is it working for you as I might ask my rheumy about

it when I see him in a couple of weeks. It has just been released on the

Prescribed Benefits Scheme here and they are calling it a wonder drug for

rheumatoid arthritis sufferers. Have just read your second post dedicated

to the newbies, I loved it, stirred my mind and emotions and started me

thinking way back to when I was well and how wonderful my life was and how

I had just gone on holidays from my job when I was hit with the monster out

of the blue. You are truly an Angel, . Your words are inspiring to

us all even though we are all sick and tired of being sick.

There is one question I wanted to post to the list in general, that is, can

you advise when you take your NS meds, like the plaquenil and prednisone.

Do you find there is a better time of day or night to take it?

Love and healing thoughts to the whole sarc family,

Toni

Brisbane, OZ

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.714 / Virus Database: 470 - Release Date: 2/07/2004

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Posted

Hi

You are lucky you have a diagnosis, I am still waiting, for a diagnosis. I

too had the double vision, facial palsy, headaches, balance problems, etc

etc. and still do from time to time. I have had the mri's, spinal tap,

blood tests, x-rays and every other test they can think of and am still

having them. I have all the systemic things like the incredible fatigue,

the pain, the weakness, etc. Myself, like most all of here have been

misdiagnosed, from virus to fibromyalgia, you name it they've said it and

believe me it isn't just at least once. I am currently on plaquenil,

prednisone 30mg daily, everytime I try to slowly reduce by 5mg every second

day it is only a matter of days and I regress and get sick again so go back

up to the thirty. I desperately want to get of prednisons as I HATE IT

HATE IT HATE IT but I hate how I feel when I am not taking it and don't

know if I could cope with that.

Responding to Roll Call, present

To the rest of the sarcoid family, I have yet AGAIN been rejected my social

security disability and am a bit down about that. It seems the crux of the

issue with them is that because there hasn't been a definitive diagnosis

because the drs are too gutless to put their name to a diagnosis but are

treating me for neuro none the less, my condition is classed as temporary

because I am still undergoing treatment and diagnosis and the outcome is

unknown. I can't believe these friggin idiots who sit behind these desks

and make these decisions about my shit of a life. grrrrrrrr!!!!!!!!!!!!!

Hi ,

I would dearly love to chat but every week when the time comes around I

forget the bloody time difference here in OZ and miss it everytime, damn

it. One of these days I'm going to set the bloody alarm on the clock and

make sure I get in there :)

Hey Rose and Jan,

Boy when I read your posts, it just hit me like a bullet how similar all

our stories with dr's and our trials and tribulations with them is. The

misdiagnoses, the bullshit put downs, and everything else. Just incredible

isn't it. Jan, congratulations on your good news, my prayers and good

thoughts are with you all for everything to be alright.

Hi

Just read your post about the Humira, we have just had an article about it

here on OZ tv show and I was wondering if it would do us any good. They

said something about using it with methotrexate. Seeing as you are having

your second shot, how is it working for you as I might ask my rheumy about

it when I see him in a couple of weeks. It has just been released on the

Prescribed Benefits Scheme here and they are calling it a wonder drug for

rheumatoid arthritis sufferers. Have just read your second post dedicated

to the newbies, I loved it, stirred my mind and emotions and started me

thinking way back to when I was well and how wonderful my life was and how

I had just gone on holidays from my job when I was hit with the monster out

of the blue. You are truly an Angel, . Your words are inspiring to

us all even though we are all sick and tired of being sick.

There is one question I wanted to post to the list in general, that is, can

you advise when you take your NS meds, like the plaquenil and prednisone.

Do you find there is a better time of day or night to take it?

Love and healing thoughts to the whole sarc family,

Toni

Brisbane, OZ

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.714 / Virus Database: 470 - Release Date: 2/07/2004

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Posted

Hi , Welcome to the group. They are the best. I thought I was gonna go nuts till I found this group a little over a year ago. Everybody contributes with a ton of information, advice or stories from their life.

I, as well as everyone else here, am too familiar with the many, many doctors. I am still having dr. issues since I was diagnosed with systemic sarcoidosis last year, skin and joints. They were concerned about neurosarc last year and did the tests but they all come out negative. I still think I may have it since I have a lot of the symptoms, but the drs. just pass it off as something else.

I, too, get the awful headaches - the ones that feel like your head is going to burn up and explode! My neuro. put me on Neurontin for them. It helps but not all the time. I still have to take Vicodin for the them and the rest of the other lovely aches and pains that come with sarcoid.

But anyway enough blabbering about me, I hope you can feel at home here and find many answers and companionship. It helps a lot. Luv, Debbie wrote:

anna

Thanks for the reply. Sorry to hear you have headaches too. Have you found any meds that work? I pop tylenol like its candy. I have vicadin but try to not take it.

M (drdoom)

iiii@... wrote: Welcome to the group, I have had neuro sar since 1999. I also have really bad headaches. My Dr. says that goes along with the monster type disease. Anyway just wanted to say hi and if you have any questions just let me know. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Posted

Hi , Welcome to the group. They are the best. I thought I was gonna go nuts till I found this group a little over a year ago. Everybody contributes with a ton of information, advice or stories from their life.

I, as well as everyone else here, am too familiar with the many, many doctors. I am still having dr. issues since I was diagnosed with systemic sarcoidosis last year, skin and joints. They were concerned about neurosarc last year and did the tests but they all come out negative. I still think I may have it since I have a lot of the symptoms, but the drs. just pass it off as something else.

I, too, get the awful headaches - the ones that feel like your head is going to burn up and explode! My neuro. put me on Neurontin for them. It helps but not all the time. I still have to take Vicodin for the them and the rest of the other lovely aches and pains that come with sarcoid.

But anyway enough blabbering about me, I hope you can feel at home here and find many answers and companionship. It helps a lot. Luv, Debbie wrote:

anna

Thanks for the reply. Sorry to hear you have headaches too. Have you found any meds that work? I pop tylenol like its candy. I have vicadin but try to not take it.

M (drdoom)

iiii@... wrote: Welcome to the group, I have had neuro sar since 1999. I also have really bad headaches. My Dr. says that goes along with the monster type disease. Anyway just wanted to say hi and if you have any questions just let me know. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Guest guest
Posted

Hi , Welcome to the group. They are the best. I thought I was gonna go nuts till I found this group a little over a year ago. Everybody contributes with a ton of information, advice or stories from their life.

I, as well as everyone else here, am too familiar with the many, many doctors. I am still having dr. issues since I was diagnosed with systemic sarcoidosis last year, skin and joints. They were concerned about neurosarc last year and did the tests but they all come out negative. I still think I may have it since I have a lot of the symptoms, but the drs. just pass it off as something else.

I, too, get the awful headaches - the ones that feel like your head is going to burn up and explode! My neuro. put me on Neurontin for them. It helps but not all the time. I still have to take Vicodin for the them and the rest of the other lovely aches and pains that come with sarcoid.

But anyway enough blabbering about me, I hope you can feel at home here and find many answers and companionship. It helps a lot. Luv, Debbie wrote:

anna

Thanks for the reply. Sorry to hear you have headaches too. Have you found any meds that work? I pop tylenol like its candy. I have vicadin but try to not take it.

M (drdoom)

iiii@... wrote: Welcome to the group, I have had neuro sar since 1999. I also have really bad headaches. My Dr. says that goes along with the monster type disease. Anyway just wanted to say hi and if you have any questions just let me know. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Posted

Toni,

The bootstrap fiary has taken your very necessary order. Do you have a

color preference? If you don't mind and if I don't hear from you soon,

I'll just leave you a case of gold fairy dust bootstraps. Yes, they

are not veiwable to the common eye, but you'll be able to see them.

Since they are virtually invisible, feel free to attache them not only

to your feet, but to every part of you that needs shoring up. Sounds

like it's everywhere. Maybe I could learn how to crochet bootstrap

vests and jumpsuits ( how late seventies!)

Hope things go better for you.

Love, like the ocean reaching out to the horizon, like the sunset that

wraps around you in a gently hug of yellow, orange, pink, purple, and

red, like the air -- the fresh sea air which makes one want to swallow

rather than breathe... it is so soulful and filled with nourishment.

This is the love I have for you and all who have suffered the

indiscribable and endured with grace to this day.

I love you, I am proud of you, and I am so humbled by all that you do

and all that you are.

WELLER, WELLER, WELLER, OY, OY, OY

RENENESS, GODDESS OF THE MEMORY OF ALL WE HAVE DONE AND ALL WE WILL DO.

> Hi

>

> You are lucky you have a diagnosis, I am still waiting, for a

> diagnosis.  I

> too had the double vision, facial palsy, headaches, balance problems,

> etc

> etc. and still do from time to time.  I have had the mri's, spinal

> tap,

> blood tests, x-rays and every other test they can think of and am

> still

> having them.  I have all the systemic things like the incredible

> fatigue,

> the pain, the weakness, etc.  Myself, like most all of here have been

> misdiagnosed, from virus to fibromyalgia, you name it they've said it

> and

> believe me it isn't just at least once. I am currently on plaquenil,

> prednisone 30mg daily, everytime I try to slowly reduce by 5mg every

> second

> day it is only a matter of days and I regress and get sick again so

> go back

> up to the thirty.  I desperately want to get of prednisons as I HATE

> IT

> HATE IT HATE IT but I hate how I feel when I am not taking it and

> don't

> know if I could cope with that.

>

> Responding to Roll Call, present

>

> To the rest of the sarcoid family, I have yet AGAIN been rejected my

> social

> security disability and am a bit down about that.  It seems the crux

> of the

> issue with them is that because there hasn't been a definitive

> diagnosis

> because the drs are too gutless to put their name to a diagnosis but

> are

> treating me for neuro none the less, my condition is classed as

> temporary

> because I am still undergoing treatment and diagnosis and the outcome

> is

> unknown.  I can't believe these friggin idiots who sit behind these

> desks

> and make these decisions about my shit of a life.  

> grrrrrrrr!!!!!!!!!!!!!

>

> Hi ,

>

> I would dearly love to chat but every week when the time comes around

> I

> forget the bloody time difference here in OZ and miss it everytime,

> damn

> it.  One of these days I'm going to set the bloody alarm on the clock

> and

> make sure I get in there :)

>

> Hey Rose and Jan,

>

> Boy when I read your posts, it just hit me like a bullet how similar

> all

> our stories with dr's and our trials and tribulations with them is. 

> The

> misdiagnoses, the bullshit put downs, and everything else.  Just

> incredible

> isn't it.  Jan, congratulations on your good news, my prayers and good

> thoughts are with you all for everything to be alright.

>

> Hi

>

> Just read your post about the Humira,  we have just had an article

> about it

> here on OZ tv show and I was wondering if it would do us any good. 

> They

> said something about using it with methotrexate.  Seeing as you are

> having

> your second shot, how is it working for you as I might ask my rheumy

> about

> it when I see him in a couple of weeks.  It has just been released on

> the

> Prescribed Benefits Scheme here and they are calling it a wonder drug

> for

> rheumatoid arthritis sufferers.  Have just read your second post

> dedicated

> to the newbies, I loved it, stirred my mind and emotions and started

> me

> thinking way back to when I was well and how wonderful my life was

> and how

> I had just gone on holidays from my job when I was hit with the

> monster out

> of the blue.  You are truly an Angel, .  Your words are

> inspiring to

> us all even though we are all sick and tired of being sick.

>

> There is one question I wanted to post to the list in general, that

> is, can

> you advise when you take your NS meds, like the plaquenil and

> prednisone.

> Do you find there is a better time of day or night to take it?

>

> Love and healing thoughts to the whole sarc family,

> Toni

> Brisbane, OZ

>

>

>

>

>

> ---

> Outgoing mail is certified Virus Free.

> Checked by AVG anti-virus system (http://www.grisoft.com).

> Version: 6.0.714 / Virus Database: 470 - Release Date: 2/07/2004

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php

>

> 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

>

>

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Guest guest   

Guest guest
Posted

Toni,

The bootstrap fiary has taken your very necessary order. Do you have a

color preference? If you don't mind and if I don't hear from you soon,

I'll just leave you a case of gold fairy dust bootstraps. Yes, they

are not veiwable to the common eye, but you'll be able to see them.

Since they are virtually invisible, feel free to attache them not only

to your feet, but to every part of you that needs shoring up. Sounds

like it's everywhere. Maybe I could learn how to crochet bootstrap

vests and jumpsuits ( how late seventies!)

Hope things go better for you.

Love, like the ocean reaching out to the horizon, like the sunset that

wraps around you in a gently hug of yellow, orange, pink, purple, and

red, like the air -- the fresh sea air which makes one want to swallow

rather than breathe... it is so soulful and filled with nourishment.

This is the love I have for you and all who have suffered the

indiscribable and endured with grace to this day.

I love you, I am proud of you, and I am so humbled by all that you do

and all that you are.

WELLER, WELLER, WELLER, OY, OY, OY

RENENESS, GODDESS OF THE MEMORY OF ALL WE HAVE DONE AND ALL WE WILL DO.

> Hi

>

> You are lucky you have a diagnosis, I am still waiting, for a

> diagnosis.  I

> too had the double vision, facial palsy, headaches, balance problems,

> etc

> etc. and still do from time to time.  I have had the mri's, spinal

> tap,

> blood tests, x-rays and every other test they can think of and am

> still

> having them.  I have all the systemic things like the incredible

> fatigue,

> the pain, the weakness, etc.  Myself, like most all of here have been

> misdiagnosed, from virus to fibromyalgia, you name it they've said it

> and

> believe me it isn't just at least once. I am currently on plaquenil,

> prednisone 30mg daily, everytime I try to slowly reduce by 5mg every

> second

> day it is only a matter of days and I regress and get sick again so

> go back

> up to the thirty.  I desperately want to get of prednisons as I HATE

> IT

> HATE IT HATE IT but I hate how I feel when I am not taking it and

> don't

> know if I could cope with that.

>

> Responding to Roll Call, present

>

> To the rest of the sarcoid family, I have yet AGAIN been rejected my

> social

> security disability and am a bit down about that.  It seems the crux

> of the

> issue with them is that because there hasn't been a definitive

> diagnosis

> because the drs are too gutless to put their name to a diagnosis but

> are

> treating me for neuro none the less, my condition is classed as

> temporary

> because I am still undergoing treatment and diagnosis and the outcome

> is

> unknown.  I can't believe these friggin idiots who sit behind these

> desks

> and make these decisions about my shit of a life.  

> grrrrrrrr!!!!!!!!!!!!!

>

> Hi ,

>

> I would dearly love to chat but every week when the time comes around

> I

> forget the bloody time difference here in OZ and miss it everytime,

> damn

> it.  One of these days I'm going to set the bloody alarm on the clock

> and

> make sure I get in there :)

>

> Hey Rose and Jan,

>

> Boy when I read your posts, it just hit me like a bullet how similar

> all

> our stories with dr's and our trials and tribulations with them is. 

> The

> misdiagnoses, the bullshit put downs, and everything else.  Just

> incredible

> isn't it.  Jan, congratulations on your good news, my prayers and good

> thoughts are with you all for everything to be alright.

>

> Hi

>

> Just read your post about the Humira,  we have just had an article

> about it

> here on OZ tv show and I was wondering if it would do us any good. 

> They

> said something about using it with methotrexate.  Seeing as you are

> having

> your second shot, how is it working for you as I might ask my rheumy

> about

> it when I see him in a couple of weeks.  It has just been released on

> the

> Prescribed Benefits Scheme here and they are calling it a wonder drug

> for

> rheumatoid arthritis sufferers.  Have just read your second post

> dedicated

> to the newbies, I loved it, stirred my mind and emotions and started

> me

> thinking way back to when I was well and how wonderful my life was

> and how

> I had just gone on holidays from my job when I was hit with the

> monster out

> of the blue.  You are truly an Angel, .  Your words are

> inspiring to

> us all even though we are all sick and tired of being sick.

>

> There is one question I wanted to post to the list in general, that

> is, can

> you advise when you take your NS meds, like the plaquenil and

> prednisone.

> Do you find there is a better time of day or night to take it?

>

> Love and healing thoughts to the whole sarc family,

> Toni

> Brisbane, OZ

>

>

>

>

>

> ---

> Outgoing mail is certified Virus Free.

> Checked by AVG anti-virus system (http://www.grisoft.com).

> Version: 6.0.714 / Virus Database: 470 - Release Date: 2/07/2004

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php

>

> 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

>

>

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Guest guest   

Guest guest
Posted

Toni,

The bootstrap fiary has taken your very necessary order. Do you have a

color preference? If you don't mind and if I don't hear from you soon,

I'll just leave you a case of gold fairy dust bootstraps. Yes, they

are not veiwable to the common eye, but you'll be able to see them.

Since they are virtually invisible, feel free to attache them not only

to your feet, but to every part of you that needs shoring up. Sounds

like it's everywhere. Maybe I could learn how to crochet bootstrap

vests and jumpsuits ( how late seventies!)

Hope things go better for you.

Love, like the ocean reaching out to the horizon, like the sunset that

wraps around you in a gently hug of yellow, orange, pink, purple, and

red, like the air -- the fresh sea air which makes one want to swallow

rather than breathe... it is so soulful and filled with nourishment.

This is the love I have for you and all who have suffered the

indiscribable and endured with grace to this day.

I love you, I am proud of you, and I am so humbled by all that you do

and all that you are.

WELLER, WELLER, WELLER, OY, OY, OY

RENENESS, GODDESS OF THE MEMORY OF ALL WE HAVE DONE AND ALL WE WILL DO.

> Hi

>

> You are lucky you have a diagnosis, I am still waiting, for a

> diagnosis.  I

> too had the double vision, facial palsy, headaches, balance problems,

> etc

> etc. and still do from time to time.  I have had the mri's, spinal

> tap,

> blood tests, x-rays and every other test they can think of and am

> still

> having them.  I have all the systemic things like the incredible

> fatigue,

> the pain, the weakness, etc.  Myself, like most all of here have been

> misdiagnosed, from virus to fibromyalgia, you name it they've said it

> and

> believe me it isn't just at least once. I am currently on plaquenil,

> prednisone 30mg daily, everytime I try to slowly reduce by 5mg every

> second

> day it is only a matter of days and I regress and get sick again so

> go back

> up to the thirty.  I desperately want to get of prednisons as I HATE

> IT

> HATE IT HATE IT but I hate how I feel when I am not taking it and

> don't

> know if I could cope with that.

>

> Responding to Roll Call, present

>

> To the rest of the sarcoid family, I have yet AGAIN been rejected my

> social

> security disability and am a bit down about that.  It seems the crux

> of the

> issue with them is that because there hasn't been a definitive

> diagnosis

> because the drs are too gutless to put their name to a diagnosis but

> are

> treating me for neuro none the less, my condition is classed as

> temporary

> because I am still undergoing treatment and diagnosis and the outcome

> is

> unknown.  I can't believe these friggin idiots who sit behind these

> desks

> and make these decisions about my shit of a life.  

> grrrrrrrr!!!!!!!!!!!!!

>

> Hi ,

>

> I would dearly love to chat but every week when the time comes around

> I

> forget the bloody time difference here in OZ and miss it everytime,

> damn

> it.  One of these days I'm going to set the bloody alarm on the clock

> and

> make sure I get in there :)

>

> Hey Rose and Jan,

>

> Boy when I read your posts, it just hit me like a bullet how similar

> all

> our stories with dr's and our trials and tribulations with them is. 

> The

> misdiagnoses, the bullshit put downs, and everything else.  Just

> incredible

> isn't it.  Jan, congratulations on your good news, my prayers and good

> thoughts are with you all for everything to be alright.

>

> Hi

>

> Just read your post about the Humira,  we have just had an article

> about it

> here on OZ tv show and I was wondering if it would do us any good. 

> They

> said something about using it with methotrexate.  Seeing as you are

> having

> your second shot, how is it working for you as I might ask my rheumy

> about

> it when I see him in a couple of weeks.  It has just been released on

> the

> Prescribed Benefits Scheme here and they are calling it a wonder drug

> for

> rheumatoid arthritis sufferers.  Have just read your second post

> dedicated

> to the newbies, I loved it, stirred my mind and emotions and started

> me

> thinking way back to when I was well and how wonderful my life was

> and how

> I had just gone on holidays from my job when I was hit with the

> monster out

> of the blue.  You are truly an Angel, .  Your words are

> inspiring to

> us all even though we are all sick and tired of being sick.

>

> There is one question I wanted to post to the list in general, that

> is, can

> you advise when you take your NS meds, like the plaquenil and

> prednisone.

> Do you find there is a better time of day or night to take it?

>

> Love and healing thoughts to the whole sarc family,

> Toni

> Brisbane, OZ

>

>

>

>

>

> ---

> Outgoing mail is certified Virus Free.

> Checked by AVG anti-virus system (http://www.grisoft.com).

> Version: 6.0.714 / Virus Database: 470 - Release Date: 2/07/2004

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php

>

> 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

>

>

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Guest guest   

Guest guest
Posted

Toni

Sorry to hear that after all the tests you have had done that they have not diagnosed you yet. I definitely HATE HATE HATE prednisone but I really fear it is becoming a love hate relationship. I started at 80 mg a day and a year later I am finally down to 5. It seems sooooo close to be off completely but then I get scared everytime my 7 day long headaches start that mabey the prednisone is too low or that my symptoms are coming back. I always end up calling my Neuro (who I simply love along with his staff). They all know me by name and are always happy to listen to my hypochondriatic rampage about my headaches and fear of recurrent meningitis. Fortunately the headaches eventually go away and my MRI and eye exams all come back fine. Has anyone on this site ever completely gotten off steroids? I would love to stay on my imune suppressant therapy and stay healthy. And lets face it ..... life without prednisone would be

a nice change. I could fit in my old clothes again..... But I would gladly stay on prednisone forever if it means not getting super sick like I was a year ago. I honestly think my ex-husband thought I was going to die and leave him with our son which woudl require him to grow up and act like an adult. (that fear almost made it worth it). I thank god every day for my neuro doctor. I truly think good doctors who you can actually believe in makes all the difference. I swear the bad doctors are trying to kill us off through neglect.

Hope this finds everyone in good spirits.

I

Toni wrote: Hi You are lucky you have a diagnosis, I am still waiting, for a diagnosis. I too had the double vision, facial palsy, headaches, balance problems, etc etc. and still do from time to time. I have had the mri's, spinal tap, blood tests, x-rays and every other test they can think of and am still having them. I have all the systemic things like the incredible fatigue, the pain, the weakness, etc. Myself, like most all of here have been misdiagnosed, from virus to fibromyalgia, you name it they've said it and believe me it isn't just at least once. I am currently on plaquenil, prednisone 30mg daily, everytime I try to slowly reduce by 5mg every second day it is only a matter of days and I regress and get sick again so go back up to the thirty. I desperately want to get of prednisons as I HATE IT HATE

IT HATE IT but I hate how I feel when I am not taking it and don't know if I could cope with that.Responding to Roll Call, presentTo the rest of the sarcoid family, I have yet AGAIN been rejected my social security disability and am a bit down about that. It seems the crux of the issue with them is that because there hasn't been a definitive diagnosis because the drs are too gutless to put their name to a diagnosis but are treating me for neuro none the less, my condition is classed as temporary because I am still undergoing treatment and diagnosis and the outcome is unknown. I can't believe these friggin idiots who sit behind these desks and make these decisions about my shit of a life. grrrrrrrr!!!!!!!!!!!!!Hi ,I would dearly love to chat but every week when the time comes around I forget the bloody time difference here in OZ and miss it everytime, damn it. One of these days

I'm going to set the bloody alarm on the clock and make sure I get in there :)Hey Rose and Jan,Boy when I read your posts, it just hit me like a bullet how similar all our stories with dr's and our trials and tribulations with them is. The misdiagnoses, the bullshit put downs, and everything else. Just incredible isn't it. Jan, congratulations on your good news, my prayers and good thoughts are with you all for everything to be alright.Hi Just read your post about the Humira, we have just had an article about it here on OZ tv show and I was wondering if it would do us any good. They said something about using it with methotrexate. Seeing as you are having your second shot, how is it working for you as I might ask my rheumy about it when I see him in a couple of weeks. It has just been released on the Prescribed Benefits Scheme here and they are calling it a wonder

drug for rheumatoid arthritis sufferers. Have just read your second post dedicated to the newbies, I loved it, stirred my mind and emotions and started me thinking way back to when I was well and how wonderful my life was and how I had just gone on holidays from my job when I was hit with the monster out of the blue. You are truly an Angel, . Your words are inspiring to us all even though we are all sick and tired of being sick.There is one question I wanted to post to the list in general, that is, can you advise when you take your NS meds, like the plaquenil and prednisone. Do you find there is a better time of day or night to take it?Love and healing thoughts to the whole sarc family,ToniBrisbane, OZ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.714 / Virus

Database: 470 - Release Date: 2/07/2004~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Guest guest   

Guest guest
Posted

Hi there my name is Jan and yes i've gotten off of steroids now for a while i'm taking methotrexate instead and doing much better on that than with the prednisone but then again everyone is different I have also had remission once that was back in 1994 but it didn't last too long......... but don't ever give up hope............

God Bless you, you are in my thoughts and prayers,

Faith makes all things possible,Hope makes all things bright,Love makes all things easy.............

Jan.......

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