[heb1212]

It's been many months now that I've read with great interest, and desperation, the stories of so many people that have experienced what was previously unheard of to myself, and almost everyone else I know. I'll try my best to give the abbreviated version of what has been a physically and emotionally trying seven months.
My symptoms started this past 10-12-11, a week to the day after a flu shot and three months after a four-week bout with parvo virus. The two may have provided the "perfect storm" for what has only been hypothesized to be a "subacute, immune-mediated, non-length dependent small fiber neuropathy" that has affected me body-wide... from head to toe burning, tingling, feezing cold numbness, and deep muscle pain. I mention the flu shot and parvo virus not because they have been directly linked to my neuropathy but because they are the only two things of recent note in an otherwise healthy background. I awoke one night to severe tingling in both feet and calves that progressed to the burning, etc. and eventually over the next five months spread through my entire body, including my face and mouth. I also had the sudden onset of SEVERE gastrointestinal problems and a fifty pound weight loss that began about a month after the neurological symptoms started.
I am fortunate enough to live near a reknown teaching university and have had referrals and testing for everything imaginable (at least I think so) and there has yet to be, as with many of you, the "smoking gun" and the best the many doctors can presume is the possibility of a post-viral syndrome as described above. Testing over the last six months has included brain, spinal and cervical mri's; two sets of nerve conduction studies; skin punch biopsy; abdominal and pelvic ct's; spinal tap; endoscopy and colonoscopy; gastric emptying procedure; and many, many rounds of blood work, including a paraneoplastic panel and auto-immune panel. EVERYTHING has returned within normal limits, except the fasting blood glucose was high at 190. I have been reassured by more than one doctor that this level couldn't possibly cause a pre-diabetic sudden body-wide neuropathy. I'm tired, but thankful that I have a compassionate and BELIEVING doctor who's treated me for years and knows that something... though we don't know what... happened.
Glenntaj, "senior member", are you still around? You're the only one I have read about that comes close to what I've exprienced... this sudden total- body, ridiculously painful, scarey experience with no explanation. As my title says, I'm reaching out. And thanks so much to the "Welcome Team". Your stories are helpful on many levels. I realize that I need the support and knowledge of others who are the only ones who can fathom this experience.

[mrsD]

Welcome to NeuroTalk:

Well I think 190 fasting glucose is alarming. Did you have A1C measured? That might reveal more.

I invite you to our PN forum, where glenntaj posts regularly:

http://neurotalk.psychcentral.com/forum20.html

[heb1212]

Oops.. I made a mistake. Thanks for responding, Mrs. D.
It was my two-hour glucose tolerance test that was 190... not the fasting blood glucose.
Thanks!

[heb1212]

My third post today... promise it won't be a habit! I have been acquainting myself with the many threads. What a wonderfully informative and supportive site.

I wanted to add that while my skin biopsy was "normal" for nerve fiber density (7.2 fibers/mm for distal thigh and 8.7 fibers/mm for distal leg) it did note morphologic occasional small axonal swellings. The neuro said they were of "uncertain clinical significance." Don't know if anyone here could elaborate on that or if it adds anything to my introductory posting.
Thank you to all that contribute to helping us newbees try to understand

[glenntaj]

--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).

[heb1212]

Originally Posted by glenntaj

--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

[Rrae]

Just wanted to say 'Welcome'!
And that you've found a crew of very knowledged folk on PN.
I've learned more here than with all my Dr's combined! Actually, this place saved my sanity in many ways.
The most frustrating thing about the PN thing has been the scattered advice/opinions I was getting from different Dr's.

The PN forum has everything you'd need to know all in one place. Hope to see you there!

Caring,
Rae