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
Quote:
Originally Posted by glenntaj
--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.
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