Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 Hi everyone. I have autoimmune mediated right-sided cranial polyneuropathy. At this point in time it is affecting 5 cranial nerves. The problem began 6 years ago with Bells Palsy. I have a team of very good doctors who have been trying to determine which disease is the root cause. At this point they think it is sarcoidosis. Because it has only affected cranial nerves I am assuming I have neurosarcoidosis. Would that be correct? The last 3 years the disease has progressed much more rapidly and with worsening symptoms. I have been on prednisone at various doses for 3 years, with many attempts to taper off. I have been given IVIG infusions which worked for a few months then stopped. Now I am on Imuran and they are planning to start me on Remicade. They speak of Methotrexate if the Remicade doesn't work. The Prednisone is " killing " me they say -- 3 broken bones, 2 this month alone, blood pressure problems, insulin resistance -- and that I have to taper off quickly, even if it results in getting ill again. I am so afraid. The illness now causes total loss of mobility and ability to eat (it has hit the 8th nerve which controls balance). To resume that condition is truly frightening. I am going for a gallium scan in 2 weeks. My CT scan was normal. One of my neurologists says it is very difficult to diagnose sarcoidosis sometimes. What is needed is a biopsy which can't be done unless my parotid gland swells up again (it is the one area outside of my cranial nerves which seems affected). I have so many questions about what I have, how they want to treat it, what to do if I get sick again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 , I could have written your note. I had shingles with bell's about 7 years ago. The last two years have been horrible. I have had worsening symptoms during these last two years. I was treated for 8 months for MS and it has been suggested that it is NS. I have a neurogenic bladder and recently went to a continence center in Charlotte, NC. I did have some enlarge hilar nodes in the chest. They were there for 9 months but were gone on the last scan. The doc said they may be hiding between slices so I am having another follow up in 3 months. Where do you live? I may have missed it. I am in Virginia and have gone to s Hopkins and Duke and now Charlotte. I had a biopsy of the left parotid but it was too small to really get anything. When you have problems do your parotid's swell a lot? Mine in the beginning were the size of an egg (left worse than right) but they are always palpable. The plastic surgeon didn't want to take it all so I would not have problems with salivation. Well, gonna go. Let me know about your treatment and if you ever get a firm diagnosis. Thanks. Terri G. > > Hi everyone. I have autoimmune mediated right-sided cranial polyneuropathy. At this point in > time it is affecting 5 cranial nerves. The problem began 6 years ago with Bells Palsy. I have a > team of very good doctors who have been trying to determine which disease is the root > cause. At this point they think it is sarcoidosis. Because it has only affected cranial nerves I > am assuming I have neurosarcoidosis. Would that be correct? The last 3 years the disease has > progressed much more rapidly and with worsening symptoms. I have been on prednisone at > various doses for 3 years, with many attempts to taper off. I have been given IVIG infusions > which worked for a few months then stopped. Now I am on Imuran and they are planning to > start me on Remicade. They speak of Methotrexate if the Remicade doesn't work. The > Prednisone is " killing " me they say -- 3 broken bones, 2 this month alone, blood pressure > problems, insulin resistance -- and that I have to taper off quickly, even if it results in getting > ill again. I am so afraid. The illness now causes total loss of mobility and ability to eat (it has > hit the 8th nerve which controls balance). To resume that condition is truly frightening. I am > going for a gallium scan in 2 weeks. My CT scan was normal. One of my neurologists says it > is very difficult to diagnose sarcoidosis sometimes. What is needed is a biopsy which can't be > done unless my parotid gland swells up again (it is the one area outside of my cranial nerves > which seems affected). I have so many questions about what I have, how they want to treat it, > what to do if I get sick again. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 I live in Canada but one of my doctors is in New York City. Believe it or not, all the doctors work together, even though they are spread far apart. In some ways I am very fortunate. I have been through lots and lots of tests, mostly negative. My MRIs showed hot spots. 3 years ago I had only 3, now I have 16 which show considerable inflammation of unknown origin. My CSF from the last spinal tap had a slightly elevated protein level. Other than that everything has been normal. CT scan, X-Rays, nerve conduction tests, etc... The ACE level test that was recently redone has not come back yet. My parotid gland during my first attack was huge. I couldn't close my mouth. Since then it hurts even when I look at food that is sour and it feels " ropey " and slightly enlarged when my doctor presses on it. I declined a biopsy several years ago because it seemed v ery extreme at the time and I was not as sick as I have been recently. Neurosarcoidosis , " mosaicgirl1 " wrote: > > > , > > I could have written your note. I had shingles with bell's about 7 > years ago. The last two years have been horrible. I have had worsening > symptoms during these last two years. I was treated for 8 months for MS > and it has been suggested that it is NS. I have a neurogenic bladder > and recently went to a continence center in Charlotte, NC. I did have > some enlarge hilar nodes in the chest. They were there for 9 months but > were gone on the last scan. The doc said they may be hiding between > slices so I am having another follow up in 3 months. > > Where do you live? I may have missed it. I am in Virginia and have > gone to s Hopkins and Duke and now Charlotte. I had a biopsy of the > left parotid but it was too small to really get anything. When you have > problems do your parotid's swell a lot? Mine in the beginning were the > size of an egg (left worse than right) but they are always palpable. > The plastic surgeon didn't want to take it all so I would not have > problems with salivation. > > Well, gonna go. Let me know about your treatment and > > if you ever get a firm diagnosis. > > Thanks. > > Terri G. > > > > > Hi everyone. I have autoimmune mediated right-sided cranial > polyneuropathy. At this point in > > time it is affecting 5 cranial nerves. The problem began 6 years ago > with Bells Palsy. I have a > > team of very good doctors who have been trying to determine which > disease is the root > > cause. At this point they think it is sarcoidosis. Because it has only > affected cranial nerves I > > am assuming I have neurosarcoidosis. Would that be correct? The last 3 > years the disease has > > progressed much more rapidly and with worsening symptoms. I have been > on prednisone at > > various doses for 3 years, with many attempts to taper off. I have > been given IVIG infusions > > which worked for a few months then stopped. Now I am on Imuran and > they are planning to > > start me on Remicade. They speak of Methotrexate if the Remicade > doesn't work. The > > Prednisone is " killing " me they say -- 3 broken bones, 2 this month > alone, blood pressure > > problems, insulin resistance -- and that I have to taper off quickly, > even if it results in getting > > ill again. I am so afraid. The illness now causes total loss of > mobility and ability to eat (it has > > hit the 8th nerve which controls balance). To resume that condition is > truly frightening. I am > > going for a gallium scan in 2 weeks. My CT scan was normal. One of my > neurologists says it > > is very difficult to diagnose sarcoidosis sometimes. What is needed is > a biopsy which can't be > > done unless my parotid gland swells up again (it is the one area > outside of my cranial nerves > > which seems affected). I have so many questions about what I have, how > they want to treat it, > > what to do if I get sick again. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2006 Report Share Posted September 10, 2006 , I am glad that you have doctors who work together. As far as the parotid, I have pain and burning and the other symptoms you discuss. It was not bad having the biopsy, I just wish we could have a larger sample so maybe they could figure it out. My MRI's have all been negative but my ACE was positive at one point and my first lumbar puncture show oligliclonal bands. The doctors here feel it is too rare of a disease for me to have. Whatever! Take care and I hope you can get a firm dx soon. Terri > > > > > > Hi everyone. I have autoimmune mediated right-sided cranial > > polyneuropathy. At this point in > > > time it is affecting 5 cranial nerves. The problem began 6 years ago > > with Bells Palsy. I have a > > > team of very good doctors who have been trying to determine which > > disease is the root > > > cause. At this point they think it is sarcoidosis. Because it has only > > affected cranial nerves I > > > am assuming I have neurosarcoidosis. Would that be correct? The last 3 > > years the disease has > > > progressed much more rapidly and with worsening symptoms. I have been > > on prednisone at > > > various doses for 3 years, with many attempts to taper off. I have > > been given IVIG infusions > > > which worked for a few months then stopped. Now I am on Imuran and > > they are planning to > > > start me on Remicade. They speak of Methotrexate if the Remicade > > doesn't work. The > > > Prednisone is " killing " me they say -- 3 broken bones, 2 this month > > alone, blood pressure > > > problems, insulin resistance -- and that I have to taper off quickly, > > even if it results in getting > > > ill again. I am so afraid. The illness now causes total loss of > > mobility and ability to eat (it has > > > hit the 8th nerve which controls balance). To resume that condition is > > truly frightening. I am > > > going for a gallium scan in 2 weeks. My CT scan was normal. One of my > > neurologists says it > > > is very difficult to diagnose sarcoidosis sometimes. What is needed is > > a biopsy which can't be > > > done unless my parotid gland swells up again (it is the one area > > outside of my cranial nerves > > > which seems affected). I have so many questions about what I have, how > > they want to treat it, > > > what to do if I get sick again. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 CIDP, Do you go by CIDP because they have diagonsed yiou with that? They treated me with that for about four years before they finally biopsied and found the neurosarcoidosis. I am having a difficult time typing tonight due to jerking so I will talk to you later Barb J.mosaicgirl1 wrote: ,I am glad that you have doctors who work together. As far as theparotid, I have pain and burning and the other symptoms you discuss. Itwas not bad having the biopsy, I just wish we could have a larger sampleso maybe they could figure it out.My MRI's have all been negative but my ACE was positive at one point andmy first lumbar puncture show oligliclonal bands. The doctors here feelit is too rare of a disease for me to have. Whatever!Take care and I hope you can get a firm dx soon.Terri> > >> > > Hi everyone. I have autoimmune mediated right-sided cranial> > polyneuropathy. At this point in> > > time it is affecting 5 cranial nerves. The problem began 6 yearsago> > with Bells Palsy. I have a> > > team of very good doctors who have been trying to determine which> > disease is the root> > > cause. At this point they think it is sarcoidosis. Because it hasonly> > affected cranial nerves I> > > am assuming I have neurosarcoidosis. Would that be correct? Thelast 3> > years the disease has> > > progressed much more rapidly and with worsening symptoms. I havebeen> > on prednisone at> > > various doses for 3 years, with many attempts to taper off. I have> > been given IVIG infusions> > > which worked for a few months then stopped. Now I am on Imuran and> > they are planning to> > > start me on Remicade. They speak of Methotrexate if the Remicade> > doesn't work. The> > > Prednisone is "killing" me they say -- 3 broken bones, 2 thismonth> > alone, blood pressure> > > problems, insulin resistance -- and that I have to taper offquickly,> > even if it results in getting> > > ill again. I am so afraid. The illness now causes total loss of> > mobility and ability to eat (it has> > > hit the 8th nerve which controls balance). To resume thatcondition is> > truly frightening. I am> > > going for a gallium scan in 2 weeks. My CT scan was normal. One ofmy> > neurologists says it> > > is very difficult to diagnose sarcoidosis sometimes. What isneeded is> > a biopsy which can't be> > > done unless my parotid gland swells up again (it is the one area> > outside of my cranial nerves> > > which seems affected). I have so many questions about what I have,how> > they want to treat it,> > > what to do if I get sick again.> > >> >>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc.net/chat/index.php 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 Yes Barb, that's exactly right. 2 years ago they thought I had some form of CIDP but have since changed their minds and now are convinced sarcoidosis is the culprit. They say it doesn't matter what they call it, the treatments will be the same. I would like to give " the enemy " a name. Something definite will help me focus my energy. Hard to explain. It would also help to explain it to other people. Hard enough to explain I am still sick even though I " look alright " today. Know what I mean? > > > > > > > > Hi everyone. I have autoimmune mediated right-sided cranial > > > polyneuropathy. At this point in > > > > time it is affecting 5 cranial nerves. The problem began 6 years > ago > > > with Bells Palsy. I have a > > > > team of very good doctors who have been trying to determine which > > > disease is the root > > > > cause. At this point they think it is sarcoidosis. Because it has > only > > > affected cranial nerves I > > > > am assuming I have neurosarcoidosis. Would that be correct? The > last 3 > > > years the disease has > > > > progressed much more rapidly and with worsening symptoms. I have > been > > > on prednisone at > > > > various doses for 3 years, with many attempts to taper off. I have > > > been given IVIG infusions > > > > which worked for a few months then stopped. Now I am on Imuran and > > > they are planning to > > > > start me on Remicade. They speak of Methotrexate if the Remicade > > > doesn't work. The > > > > Prednisone is " killing " me they say -- 3 broken bones, 2 this > month > > > alone, blood pressure > > > > problems, insulin resistance -- and that I have to taper off > quickly, > > > even if it results in getting > > > > ill again. I am so afraid. The illness now causes total loss of > > > mobility and ability to eat (it has > > > > hit the 8th nerve which controls balance). To resume that > condition is > > > truly frightening. I am > > > > going for a gallium scan in 2 weeks. My CT scan was normal. One of > my > > > neurologists says it > > > > is very difficult to diagnose sarcoidosis sometimes. What is > needed is > > > a biopsy which can't be > > > > done unless my parotid gland swells up again (it is the one area > > > outside of my cranial nerves > > > > which seems affected). I have so many questions about what I have, > how > > > they want to treat it, > > > > what to do if I get sick again. > > > > > > > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST > OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST > SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST > > CHATROOM LINK: http://www.emxpc.net/chat/index.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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Hard enough to explain I am still sick even though I "look alright" today. Know what I mean? Oh yes, ... we all know what you mean!!! Looking well, but feeling poorly, Joan Quote Link to comment Share on other sites More sharing options...
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