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Old 02-21-2009, 11:20 PM #1
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Default Autoimmune and Pain - nueuropathy

i am seeking members who not only have autoimmune issues (as i do) but other problems such as neuropathy. I believe these issues are related and think we need to join together to get the attention of the medical community. I am not ready to accept a diagnosis of dealing with pain. I have my own autoimmune issues as well as neuropathy and believe there is a connection.

Please see my posting under peripheral neuropathy. i am bound and determined to pursue this.. would love some help.
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Old 03-23-2009, 02:20 AM #2
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Quote:
Originally Posted by spkar0517 View Post
i am seeking members who not only have autoimmune issues (as i do) but other problems such as neuropathy. I believe these issues are related and think we need to join together to get the attention of the medical community. I am not ready to accept a diagnosis of dealing with pain. I have my own autoimmune issues as well as neuropathy and believe there is a connection.

Please see my posting under peripheral neuropathy. i am bound and determined to pursue this.. would love some help.
Spkar - I have both too. I have a lot of autoimmune diseases which started when I was 15 and then was diagnosed neuropathy after surviving high-dose chemotherapy and radiation. The neurologist said the neuropathy was from one of the chemo drugs - Vincristin. But my mother has it, my sister has it, cousins, etc. It's hereditary. Nannygoat
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Old 03-25-2009, 05:19 PM #3
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Hi, I have peripheral polyneuropathy and have been told I most probably have Sjogren's. None of my tests for Sjogren's as of yet have been positive but I do have severely dry eyes/nose/mouth and quite a few other symptoms (Raynauds etc). I am currently awaiting my second lip biopsy which hopefully will confirm the Sjogren's. I have been told (and have read) that polyneuropathy can be a side effect of a number of autoimmune diseases, including Sjogren's. I believe the medical community is quite aware of these linkages but that there is little being done to figure out cause, treatment etc. I also find it confusing how I can be told there is no treatment for Sjogren's but I could try prednisone for my neuropathy (which is caused by Sjogren's....). Anyway, good luck, let us know how it goes.





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Originally Posted by spkar0517 View Post
i am seeking members who not only have autoimmune issues (as i do) but other problems such as neuropathy. I believe these issues are related and think we need to join together to get the attention of the medical community. I am not ready to accept a diagnosis of dealing with pain. I have my own autoimmune issues as well as neuropathy and believe there is a connection.

Please see my posting under peripheral neuropathy. i am bound and determined to pursue this.. would love some help.
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Old 03-28-2009, 04:16 PM #4
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I was first diagnosed with Multifocal Motor Neuropathy which started with painful cramping in my right hand and fingers. I have now gone to a diagnosis of CIDP because of pain and severe sensitivity in my right hand plus weakness has now gone over to my left leg and foot.
I am told this is a rare disease so it helps to find people and exchange notes. I am on IVIG treatments which so far have kept things at bay.
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Old 05-06-2009, 12:18 PM #5
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I have just been diagnosed with Neuropathy & myopathy due to a connective tissue disease, It is an overlap with my Myasthenia gravis. Back to the Reumy for a look on worsening symptoms !
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Old 05-07-2009, 06:25 AM #6
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My neuropathy is related to autoimmune diseases. It's genetic, not diabetic or alcoholic induced. I'm on 5mg of prednisone a day to keep it stable.
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Old 07-13-2009, 06:57 PM #7
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Hi - can you tell me how the prednisone is going? One of my neurologists recommended it (the other advised against it) - so far I haven't taken it for fear of side effects (glaucoma, sleeplessness, irritability, weight gain etc). I would love to hear whether all these concerns are valid (knowing that everyone reacts differently)

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My neuropathy is related to autoimmune diseases. It's genetic, not diabetic or alcoholic induced. I'm on 5mg of prednisone a day to keep it stable.
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Old 07-17-2009, 03:23 PM #8
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I have Crohn's, eczema, arthritis, episcleritis, and peripheral neuropathy. I avoid prednisone like the plague, as when I was on it initially for severe ulcerative colitis I became extremelydepressed -- no, despondent -- and suffered many of the side effects immediately (my skin thinned and aged 2 decades practically overnight).
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Old 07-19-2009, 10:27 AM #9
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Originally Posted by lefthanded View Post
I have Crohn's, eczema, arthritis, episcleritis, and peripheral neuropathy. I avoid prednisone like the plague, as when I was on it initially for severe ulcerative colitis I became extremelydepressed -- no, despondent -- and suffered many of the side effects immediately (my skin thinned and aged 2 decades practically overnight).
Also have many neuropathy problems, MS and now at least one other auto-
immune (Collagenous Colitis) plus allergies of various types. I am quite sure
that they are all connected. I have had varied success with prednisone,
doximethazone and Solumedrol, each time different, some bad, others very
helpful. It can't hurt to try, but don't start on or right before a weekend.
You may just need to be in touch with Dr's office! Good luck.
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Old 08-18-2009, 06:09 PM #10
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They tell me my PN is related to the fact I have some kind of AutoImmune Disease, so I am with you.
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