--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).