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.
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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