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Old 10-01-2011, 11:14 AM #1
Hermes Hermes is offline
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Hermes Hermes is offline
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Default Update

Well it's been a while since I've been on. My official Dx is idiopathic polyneuropathy. I have all sorts of strange pain and sensations in my legs mostly. The local docs couldn't figure it out so I ended up at Johns Hopkins in Jan 2010. They came up with the Dx in June 2010 after all sorts of tests.

I've tried just about very med they can think of including narcotics. I cannot do narcotics. After about 3 months my anxiety level gets to the point that I cannot function. The pain is better than that. I'm on Cymbalta again as it helps some.

My local neuro ordered a lumbar puncture in August, that was fun... That was one of the few test Hopkins didn't do. The results show higher than normal protein levels but just slightly higher (one was 47 and the other 53) with normal being <45. My neuro said this suggests chronic inflammatory demyelinating polyneuropathy (CIDP). She was going to consult with some other neuros about it. I see her next week to see what came of that. She was talking about Intravenous immune globulin (IVIg) as a possible treatment. That sounds not fun and expensive, even with fairly good insurance, but if it solves the problem it would be worth it.

Anybody have any info on CIDP or IVIg?
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Old 10-01-2011, 11:49 AM #2
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There is an IVIG post in the Subforum:

http://neurotalk.psychcentral.com/thread139835.html

Also some posters at Myasthenia Gravis forum here use IVIG...
If you search there using "IVIG" as a keyword, you can see the posts, concerning infusions/side effects etc.
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