--that I've found in case report medical literature that experienced an acute-onset (as in hours), full-body, small-fiber Guillain Barre like syndrome, though I suspect that this is probably somewhat more common than reported. (I don't think many neurologists recognize it and it is hard for patients experiencing it to explain what is happening--the vocabulary for nerve pain is very difficult. I used to say "imagine you get a sudden sunburn all over your entire body and the someone rubs it with steel wool".)

I don't have a lot of time this morning, but one can definitely read about my journey here at Neurotalk (and in a lot of other places; I've been very public about all this since it started back on April 11 2003).

In sum, though, the peak of symptomology lasted about 4-6 months, though I was fortunately more functional after ramping up to a rather high dose of Neurontin early in the journey--fortunately that drug helped me considerably. In the early stages I couldn't even wear clothing, as the burning pain was both spontaneous and easily induced, even by a breeze.

Very exhaustive investigations did not reveal a cause; I had normal results on all tests, except on skin biopsy, which did show small fiber neuropathy. Autoimmune mechanisms were suspected, but not proven. The usual idea with these cases is molecular mimicry--the body is invaded by a pathogen, fights it off with an immune response, but the pathogen's molecular shape is similar to that of some bodily tissue and the now activated immune system cannot distinguish friend from foe (a lot of immune system response is shape-based or "key-in-lock"), so that bodily tissue gets attacked. In my case it seems it was small fiber nerve. I never had any apparent large fiber involvement or motor symptoms.

I did notice small improvement towards the end of the first year, and it is typical of these syndromes to result in very slow, partial, patchy recovery. And yes, one gets all sorts of weird sensations as nerves regrow--as I often write, it's touch to distinguish these from worsening, except in long term retrospect.

I'm about 85-90% recovered, and this is montiored with skin biopsies every two years. My intraepidermal nerve fiber density increased considerably over the first decade and has stabilized now, though who knows if it got back to what it would have been originally, had I been tested when "normal". (No one gets a skin biopsy for NO symptoms, except the original norming cohorts.) But, yes, I've gotten intermittent flares over the years, and I am of course subject to all sorts of compressive effects as I've described, probably having more symptoms from those than a "normal" person would have (such as from spinal foraminal compromise, which I do have a lot of in my neck/cervical spine--separate issue, but it wouldn't be as bad, we think,if the syndrome hadn't happened).

It sounds like you may have experienced something analagous, and with some autonomic aspects added in--since many autonomic functions are small fiber controlled, having autonomic symptoms is not uncommon in small fiber syndromes, acute or chronic.

Hi Glen, I appreciate your info. I have tried to look back at some of your old posts regarding what I'm looking for, but not having much luck.

A few questions for you if you wouldn't mind, I would greatly appreciate it.

Can you describe your symptoms as you were healing? Did you have a lot of new random symptoms and sensations? When did you realize you were getting better?

I feel as though my symptoms definitely peaked and have gotten better, but the flare ups are what makes me think the opposite.

Did you have a lot of flare ups during this process, which made you feel as though it was not getting better, or possibly worse?

When was your initial biopsy, and when was your follow up biopsy? Do you know the results between the two - I'm curious how much improvement you have seen between biopsies.

I really appreciate your time

--my first skin biopsy at the height of my syndrome showed that I was in the third percentile of intraepidermal nerve fiber density; one two years later when symptoms were much reduced was at the 17th percentile, with the nerve fibers in much better condition (and was designated "normal"). Of course, no one has any idea what percentile I was at before all this started; density percentiles from 5 to 95, in the absence of evidence of actual fiber degeneration, are considered "normal" (which always seemed to me rather arbitrary--it's an artifact of the protocols of the original norming studies done at Johns Hopkins).

And, absolutely, through that whole healing process (and still sometimes) I have gotten burns, zaps, phantom sensations, parastheses, the whole host of odd and unusual sensations that are not objectively produced by external touch or reactions to temperature. And yes, a lot of them have felt like those that I have experienced in the damage phase. It's one of the reasons I have always encouraged people to keep detailed symptom diaries; it's often hard to tell the patterns except in long term retrospect. With healing, generally these sensation will crop up but they will be more intermittent and will eventually recede, but one may not be able to tell that unless comparing over months.

Hi Glen,

I stumbled across this thread. Hope you don’t mind a few additional questions.
Are/Were you on any specific regimens, diets, supplement protocols etc.?
Do continue to take gabapentin or other meds or did you stop once the healing started?
Any autonomic symptoms during your journey or purely sensory stuff?

Thanks

--taking Gabapentin as the symptoms waned, but since I had gotten up to 2700mg/day it took me some nine months to wean off it completely. The standard protocols with Gabapentin reduction tend to recommend a reduction of 100mg/week by I went even more slowly as I wanted to minimize any chance of major rebound pain or increased seizure possibility due to central nervous system signalling upregulation during the Gabapentin redgimen (Gabapentin tends to work by suppressing central nervous system signalling rate as many anti-seizure meds do).

I wasn't on any special nutritional regimen other than the general recommendations that tend to be made--I took 1000mcg of methylcobalamin B12 three times a week, fish oil and magnesium citrate each day. I tried a trial of 100mg/day R-lipoic acid for some months but didn't think it was having much of a effect so I weaned down and stopped that.

There may have been some slight autonomic symptoms from time to time, though I emphasize slight, mostly regarding blood pressure and sweat responses. It is common for people with small fiber syndromes to have some degree of autonomic symptomology though for the majority these tend to be minor and often subclinical.

i notieced you took Gabapentin for your SFN. how long were you on it. did you have any side effects? how did you know is was time to come off it?

Hi Glen,

Thanks for the information. I know it has been awhile, but did you deal with muscle fasciculations? Did you have random symptoms/sensations pop up all over the place, even in new places that would wouldn't stick?

I'm very curious about the details, as I'm currently in the middle of this, 1.5 years in. The severity of the worst of my symptoms have definitely improved, but I still get random symptoms and sensations almost anywhere on my body that seem to pop up, last anywhere from minutes to days, possibly even a week and then simply disappear as quickly as they came. Nothing seems to stick outside of some of the original symptoms, and those are definitely less severe.

I do have one symptom that showed up about 3 months ago and has not left since - my left lower eyelid keeps twitching. Did you have anything like this?

At the peak of this, my hands were numbing, burning, textures felt SUPER strange and uncomfortable.. today, my hands feel so much better when comparing to this. Yet along side some of the relief, like I mentioned above, I still get random symptoms and sensations, but nothing super concerning outside of the eye twitch I've had.

Would like to hear your thoughts on this

I did forget to mention a few things. As I mentioned in the beginning of this thread, my autonomic symptoms are so much better as well. I had a lot of deep aching in the palms of my hands towards the beginning of this as well, and I have not had that in quite some time now as well. I like to think the symptom improvements are a good thing, but this is along side random new symptoms, and in new places that come and go.

Now to make things more confusing, my first set of biopsies were done only 3 months from the start of the first symptom (Sept 17'), and repeat biopsies done this Sept 18', and they are worse, yet my symptoms have improved. I do feel like my symptoms peaked after my initial biopsies, It's all very confusing. I tend to wonder if I had my first set of biopsies too soon at the start of this, in the middle of damage, and therefore the numbers are skewed - neuro tends to think this is possible as well, and this is the same doctor that thinks this should heal up, and still seems to think that way.

--some intermittent symptoms, including small fasiculations/twitches. The fasciculations, though, tend to be in my arms, which leads me to believe they may not be related to the original neuropathic process but rather the far more mundane cervical spine disease I have. I have considerable foraminal narrowing and nerve root compression at several levels of my cervical spine, and do get symptoms in my shoulders, arms, and hands from that, although good physical therapy has lessened the symptoms and kept me out of the surgical suite so far.

This, of course, points up the fact that it's often very hard to distinguish neural symptoms caused by spinal processes from those caused by more peripheral ones, as they can be experienced similarly. It's also why a search for the causes of neural symptoms is often very long and very process of elimination, if you can even get physicians to maintain that degree of interest (and your insurance approving further testing).

Did you do anything specifically to help you recover?