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Originally Posted by glenntaj
If you showed up with a positive EMG--meaning one that wasn't "normal"--you don't just have small fiber involvement; you have large fiber involvement as well.
EMG and nerve conduction studies cannot ascertain the functioning of the smaller, unmyelinated fibers that subsume the sensations of pain and temperature (and many autonomic functions); it would take sudomotor axon reflex testing, qualitative sensory testing, or most commonly, skin biopsy for that. But EMG/NCV can reveal problems with larger, myelinated nerves that subsume the sensations of mechanical touch, vibration, and positioning, as well as motor functions.
Still, post-viral and bacterial infections leading to neuropathy are not uncommon, though often underdiagnosed. The good news is that often in such acute onset post-infectious neuropathies in which autoimmune molecular mimicry is suspected there can be slow, partial recovery (though it is often VERY slow and VERY patchy).
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Great info! Yes I had two EMGs and both came back "abnormal" in one of the various tests. So maybe I have large fiber involvement. I had muscle "weakness" as I described it early on, but all the function tests showed full normal strength. The weakness seems to have largely gone away.
Do you happen to know any tests I should suggest to my neurologist? And if you know, could post-infection neuropathy be WHOLE body? I really have loss of sensation (like my skin has clothes over it when I touch) in every inch of my body.
And when you say "very slow" are we talking 5 years to recover? Any supplements or anything that could help?
Quote:
Originally Posted by Lara
Just be careful with the amount of B6 in the B Complex. Some people on this forum have written about having increase in neuropathy symptoms on higher doses of B6. Do get your B12 checked though.
Having numbness like that all over certainly must be very disturbing for you. my daughter had post viral syndrome as they called it here (ME/CFS) after Epstein Barr Virus. Affected her life greatly for many, many years and still a little to this day. She had parasthesias but not like you describe. They were scattered in different places on her body, like patches. They resolved thankfully.
I hope you have a very good doctor who can guide you through all this.
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Thanks Lara. I had my B12 checked very early, it was in the 800s and normal is up to 850 I think.
I got my B6 checked in March and it was also normal. I could check them both again but I have not taken megadoses of B6 or B12 since, just regular B complex once a day and some days I forget.
As for your daughter - I had Mononucleosis as a child so I do suspect covid may have done something with EBV in me, not sure. How did your daughter cure her ME/CFS? Was it just time? I don't seem to have chronic fatigue, just this entire body neuropathy.