Quote:
Originally Posted by glenntaj
--no diagnosis was ever forthcoming--I am still, after all these years, "idiopathic".
And yes, it's very hard to distinguish between an acute onset body wide small-fiber neuropathy and a similar onset where the attack is on the dorsal root ganglia. Dr. Moghekar, who is the Johns Hopkins researcher who wrote aboutthis and who I've corresponded with, says since the technology does not yet exist to adequately image the dorsal root ganglia, a determinatin on that score awaits my autopsy (which, I gather, is typical neurologist humor).
Moreover, it would be very hard to distinguish this from a sudden attack of Central Pain--the type that occurs when there is sudden damage to the spinothalamic sensory tracts that go from the upper spine to the brain. People who get this report very similar symptoms, and there are many causes, including stroke/transient ischmeic event, multiple sclerosis, meningitis, and, interestingly, subacute cord degneration from B12 deficiency (which does not only affect the peripheral nerve, but can impact every cell i the body).
Take a look at
www.centralpain.org
www.centralpain.com
I do think, given the high folate/low B12, that the testing Mrs. D talks about is worth pursuing. |
Aha, I see. A diagnosis at autopsy isn't going to help with quality of life is it? well, not ours at least
Thank you for this information. I shall be addressing my B12/folate issues and following several of MrsD's suggestions. Do you still suffer the burning to this day. Do you notice things that bring it on, reduce it? or is it pretty constant. If I am relaxed and lying down, the pain is almost not there... and I think, hmmm, it's clearing up, it was all just bad dream, but then sure enough, it returns. Such a horrid feeling. Apart from the burning, I have the finger pain. Do you have any other symptoms along with the burning?. Many thanks again.