Hello, new here. Will try and make this short and to the point.

Last year, March 29th 2017, was the start of a bad gut infection that came out of no where. Had the full work up after it wasn’t subsiding on its own. Colonoscopy, stool samples, CT scan, the whole 9. They found a lot of inflammation during the scope, even in my small intestine. Said it could possibly be Crohn’s. Ended up headed to an IBD specialist who assured me he was sure it was a bad bug. Follow up inflammation check 3 months later, it was all cleared up.

In the midst of this, I had my first neurological symptom on June 17th 2017, starting in my face and quickly went body wide. Twitching all over, strange feelings in hands and feet, burning, numbness in hands, etc. juggled through about 4 neurologists who all shrugged me off after clean EMg’s and brain MRIs, I finally saw an SFN specialist. Skin biopsy proved I was positive for SFN.

Long story short, none of the extensive testing I had done at mayo showed up with anything, except for a “normal” b12 of 344. I felt this was low, so have been supplementing since. He said he thinks the gut infection was the cause of this, and I should heal up in time. Said this damage usually peaks, and then slowly starts to heal. Nothing I read online speaks much of SFN healing, nor do I find recovery stories. I do have to say, that I feel this peaked around October of last year, and symptoms have definitely improved. They are very up and down, with new ones popping up and leaving so it is very hard to tell. The severity of the worst of my symptoms are definitely better, though. Is this a good sign?

Do people really recover from SFN? What does nerve regrowth feel like?

I was diagnosed with idiopathic PN one year ago. I have chronic auto-immune conditions, including Celiacs and Microscopic Colitis, so definitely have gut problems.

Interestingly, in the light of your history, I have just started experimenting with my diet since my gut is in perpetual turmoil. Is there a connection? Maybe. Certainly if you have one auto-immune disease you are more likely to get another (if idiopathic neuropathy can be labeled "auto-immune, that is). Perhaps the correlation goes deeper, and gut problems can sometimes precede neuropathy. I don't know.

I am experimenting with my diet right now. I am cutting down on cereals and grains, carbs generally, and I'm surprised how quickly this has improved my gut.

In terms of neuropathy, my consultant suggests that mine should remain stable (my symptoms are paresthesia and constant calf fasciculations). He also says that most "idiopathic" neuropathies he diagnoses actually run in families (genetic) but many only experience mild, easily ignored symptoms (eg., twitching eyelid).

There is research that offers hope for those with diabetic PN in redesignating pirenzipine which is an existing ulcer treatment. Human trials are now taking place. You can google Winsantor (the company behind the research) to find out more, though obviously this is still at trial stage and even if it impacts one cause of neuropathy it doesn't necessary mean that it will work for all. The company is taking a very proactive, humane line to their research, so my (limited) communications with them offer me some hope for the future. This treatment, in lab specimens, has been shown to halt damage and even regrow nerves--but humans, of course, are a different . . . er, animal.

Also there is very limited research that viagra might assist healing (labs), but, again, in diabetic neuropathy in which the causal mechanisms might well be different. Google viagra and nerve damage etc. If I could get my hands on a two months supply of viagra, I would self-trial it!!

The condition has affected me very badly, but particularly psychologically, particularly since the symptoms are so weird, difficult to explain to others, and make me feel isolated; however, they do--please God--seem to have stabilized. I don't like taking nortiptyline but it does seem to help a little in stabilizing the buzzing and tingling. My calf fasciculations never stopped, though.

I think you will grow more accustomed to the condition, and make a peace with it.

Hi Digitalx

Welcome to NeuroTalk .

I am sorry to read about your SFN.

I can't directly answer your questions because my PN is in my hands only and most likely is a consequence of when I abused alcohol. It has subsided since I quit.

I hope that other members whose experiences of PN are more similar to yours will be able to offer you support and constructive suggestions.

Best wishes.

--particularly those that come from autoimmune triggers or toxicities (and what you described might well have elements of both), do have a tendency to result in slow, partial recovery once the offending cause is removed, but because nerves tend to heal slowly, and often in different pathways than their original ones due to the need to grown around, through, and past other tissues, the healing regimen often produces all sorts of weird symptoms in itself, which can feel very much like the original symptoms of nerve damage (parastheses, intermittent numbness, nerve pain, etc.). The brain has a lot of trouble figuring out exactly how to interepret the odd signals coming from damaged/repairing nerves, although eventually it tends to settle somewhat.

But this is why many of us keeps symptom diaries, as it is often hard to tell whether one is getting better or worse except in long term retrospect.

Also, recovery may not be complete. In many cases, it's patchy. And, the new nerve configurations often leave one more prone to compressive effects than someone who had not gone through this; it's easier to compress nerves lying near or in other tissue than it might have been before. So one tends to be prone to "weirdities" for the rest of one's life. (I never had trouble with my pudendal nerve area, for example, until after my acute onset body-wide small fiber syndrome in April 2003. I experienced considerable recovery over years, but I still have lots of things that crop up from time to time suddenly, make me uncomfortable for a while, and then slowly disappear.)

Thanks for the information, I have not read anything on either of these and find that very interesting. I have read on ARA290 in the recent past, but not much more than that.

Glen,

I was just reading some of your posts last night. Mind if I ask you some questions?

How did your SFN start? How long until you healed up, or at least most of the way? I’m really curious about your journey as you were healing - what symptoms did you have? New ones come and go constantly? Flare ups?

I’m really confused by all of this. I have a lot of symptoms that are alaresdy a lot better, but then I get new ones that come and go, or flare ups that last a day or 2, or even a week and then go away.

At the peak of this I had very strange numbing in my hands, textures felt aweful, vibrations felt like they continued to vibrate even when I wasn’t touching, say my phone or toothbrush, anymore. Hands were sweating a lot at random times. Vision would almost black out upon standing up, etc. Had twitches all over my body as well.

With that said, numbing has gone away, the vision black out upon standing is pretty much gone but do get a little lightheaded upon standing for maybe 5 seconds. Hand sweating seems a lot more normal, twitching is way way better as well. I would assume it’s safe to say that if I feel this peaked around October of last year, can use this as a starting point of healing? If so, it hasn’t even been a year yet, with this much improvement.. is that a good sign?

Sorry for the wall of text, I have only seen a few speak of healing from experience. I’m trying to remain optimistic and listen my doctor, who is an SFN specialist, but it becomes difficult to tell which direction this is headed with the symptoms coming and going.

I was getting a lot of zinger type feelings, even tickles, some slight itchiness and such as well. I kept hoping this was a sign of healing but who really knows.

--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.

Welcome Digitalx.

This is in the category of "for what it's worth."

I strongly suspect that my gut may have been involved (or be involved) with my idiopathic SNF. In August of 2013, I horribly insulted my gut with iron supplements I was taking due to single digit ferritin levels. I'm not exaggerating when I sway it felt like I had burning kerosene in my gut. I stopped the supplements immediately, but my symptoms persisted.

At the same time while this was happening, I developed horrible neurological symptoms in my head. I had them once before in the 80s, but a neuro workup never revealed the cause of them. I can only say that it felt like my brains were trying to explode out of my head. It was a sickening pressure-like feeling that was very uncomfortable, but not painful. I also had brain fog. Slowly, but surely, that subsided over several weeks just as it had back in the 80s. On Nov. 10, 2013, I woke up with full-body neuropathy. It was REALLY bad initially, and I was panic-stricken, which did nothing to help the situation.

To make a long story short, the cause of all this remains unknown. The only abnormal result in all my testing is an area of "subtle hypersensitivity/signal abnormality" in my brain.


I can't help but wonder if the toxic insult to my gut with the iron supplements, perhaps coupled with a genetic tendency to have issues with iron processing, caused damage. The good news is that over the course of the past five years, my symptoms have improved. They're definitely not gone, but they're improved.

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.