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Old 04-21-2012, 08:47 AM #6
heb1212 heb1212 is offline
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Join Date: Apr 2012
Location: Upstate New York
Posts: 107
10 yr Member
heb1212 heb1212 is offline
Member
 
Join Date: Apr 2012
Location: Upstate New York
Posts: 107
10 yr Member
Confused Reaching Out

Quote:
Originally Posted by glenntaj View Post
--though I'm sorry for what brought you here.

Yes, I had an acute onset, body-wide, burning neuropathy--mine encompassed my whole body in hours/days. And yes, I had not a single negative/abnormal result in very thorough battery of tests, until the skin biopsy, which did show considerable reduction in intraepidermal nerve fiber density.

The most likely, though by no means only, explanations are some sort of pan-body autoimmune molecular mimicry reaction, or some sudden toxic reaction. While that 190 level during the glucose tolerance test is a bit alarming, I tend to agree that it would be unlikely to cause that acute an onset of neuropathy--though there are some acute diabetic neuropathies, they usually are more confined to certain areas. This should be investigated, though.

The skin biopsy result is interesting--you are not THAT far from the 5th percentile levels that under the McArthur protocols developed at John Hopkins would define you as having a small fiber neuropathic process. It may be that when the skin biopsy was done you were in the midst of nerve degradation and a later follow-up skin biopsy would show enough de-enervation to put you below that fifth percentile. It's possible, or even likely, that you began at a much higher percentile and have been losing nerve, though this would be hard to prove (nobody goes to get their nerve fiber density measured before symptoms happen, so nobody knows just where s/he started on that scale--I've been writing about this on the peripheral neuropathy board lately, and as Mrs. D, says, you should visit there).
Glenn. THANK YOU so much for your answers to posts. You seem to be a valuable resource here! I am glad to hear that, though it be over a long period of time, your awful symptoms have improved. It has given me hope that I too, if woefully patient, will improve. The confusing part of this to me and maybe the doctors, too (autoimmune and viral vs. toxic and flu shot) was my feet were extremely and unusually painful ever since the parvo virus thing and the flu shot may have sent me over the edge while still fighting another virus??? Anyway, my questions now to the doctors are they are just treating this symptomatically (Gabapentin) and I continue to wonder if I need treatment/medication to knock this "thing" out of me, i.e. prednisoe or something. The neuro/chief of neuropathy dept. said if this was post virall it could take a year or two... which if that be the case, I'd be doing my countdown... but if it's something that should be treated instead of just symptomatically and I'm just hope and waiting, it's time lost and damage done. Thanks again... to all who respond.
Cathy
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