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Old 02-10-2007, 07:36 AM #2
glenntaj glenntaj is offline
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glenntaj glenntaj is offline
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Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
Default Some thoughts.

Doctors often say tests are "normal" because they believe patients have no ability to interpret them. Worse, sometimes there are flagged abnormal results that doctors ignore/dismiss. It's a good idea to get copies of ALL your lab results for your own records, and so you can bring them to any new doctors you will see in the future.

It does sound as if, given the acute onset, you may have had a viral or autoimmune molecular mimicry attack selective to the small-fiber nerves, which underlie autonomic functions as well as the sensations of pain and temperature. These are not easy to diagnose, as most of the usual tests of larger-fiber nerve function won't show it, and you would need to get specialized testing (and I sympathize with those on Kaiser who have such trouble trying to get such testing).

Take a look at this:

http://www.neuro.wustl.edu/neuromusc...andysautonomia

This condition, pandysautonomia, is almost like an autonomic system Guillain-Barre syndrome: acute or sub/acute onset, viral/bacteria prodrome, full-body symptoms.

This is only a speculation, of course, but I would start questioning the doctors and mentioning the term; "polyperipheral neuropathy" is only a catch all term that means many nerves outside the brain/spinal cord are under attack; it's not specific as to etiology or prognosis. And I'm hoping you can find a neurologist who specializes in neuropathy, as not all do (and many have only a passing familiarity with it, and are unaware of the many causes/presentations/tests that might be involved, or of potential treatments, such as immune modulating agents like IVIg).

Last edited by glenntaj; 02-11-2007 at 06:54 AM.
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