Thread: Glenntaj
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Old 03-05-2016, 07:27 AM
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 Just to answer a bit--

--no, I was never offered steroids or other immune modulating treatments as there was no direct evidence that inflammation was causing my acute onset body wide neuropathy. All my inflammatory marker testing was quite normal, and I did not test positive for any antibodies (my testing, over months, was very extensive).

On the other hand, we still think that though officially idiopathic, my neuropathy may well have involved a post infectious autoimmune molecular mimicry response, and it may well have involved autoantibodies specific to my physiology that would not have been identifiable by standard tests. (This is thought to be a distinct possibility for many who are otherwise labelled idiopathic.) We say this not only due to the results of the skin biopsy, but due to a mild positive on Cornell/Latov's own ganglioside agglutinin test, which is a very gross measure of nerve antigen antibody activity. These were the only two tests to ever be positive in my case.

My symptoms were severe from the first hours, though I got some relief from gabapentin updosing after a few weeks. The effect of the gabapentin certainly masked symptoms as the months went on. I did start to notice a symptom reduction about 6-8 months in, and began to reduce my gabapentin dosage after about 12 months. I did it really slowly--it took almost a year to get off it completely--I'd been up as high as 2700mg/day (though I am a fairly large specimen) as I did tend to get little symptom upticks each time I reduced the dose. But after two years symptoms were about 90% gone, though even now, almost thirteen years later, I am prone to flares and compressive effects from time to time.
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