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Old 10-26-2007, 04:30 PM #5
glenntaj glenntaj is offline
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Join Date: Aug 2006
Location: Queens, NY
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glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
Default I am curious--

--and not sure whether you mentioned it before--how did this neuropathy begin, and how quick was the onset?

Thre are many varieties of immune-mediated neuropathy, and they can have acute, subacute, or rather slow onsets. Moreover, they can affect primarily the larger fibers (the kind that can be tested using nerve conduction studies), the smaller, unmyelinated fibers (the kind that subsume the sensations of pain and temperature), or both. It may be, from what you've posted, that you've had a Guillain-Barre like-syndrome that affected both small and large fibers, and the larger fibers have "healed" somewhat, but the smaller fibers are doing so more slowly. In fact, it is possible your sensations are those of regenerating small fibers, which can, as they grow back and attemtpt to re-enervate their original targets, produce "weird sensations" (parastheses) that the brain has trouble interpreting.

AND--there are also numerous variations of CIDP, including a predominantly sensory variant that has as primary symptoms pain/tingling, rather than motor difficulty:

http://www.neuro.wustl.edu/NEUROMUSC....html#cidpsens

It may really be very difficult to tell any of this, though, without proper testing, and from what you've written, that may be very hard to do in your part of the world. The improvement with IVIg does point to some form of autoimmune process--and many people have been prescribed it "off-label" for unusual neuropathy presentations and have benefitted--but as to what is really going on, that may take a nerve or skin/punch biopsy, and probably many more tests than you've had. (Have you seen the test spreadsheets at www.lizajane.org, by the way? It would really be useful to get a lot of autoantibody testing, as these, if they are found, have strong prognostic implications.)

My sense is that since you are young, if this had an acute onset, you can probably expect some slow recovery, though complete recovery is unlikely. But you may recover to the point that you can lead most of a "normal" life.

(I myself have gone through an acute-onset body-wide burning sensory neuropathy in which autoimmune molecular mimicry processes are suspected, but have never been proven. I have had, over the last 4.5 years, considerable, though not complete, recovery. And I do take a wide variety of supplements, including B complex, seperate sublingual methylcobalamin B12, consdierable fish oil, R-lipoic acid, magnesium.)
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