I went to my general doctor and explained everything. Apologies for the long post, but it has a lot of my thoughts on this. She said she didn't want to order all the really advanced antibody tests until she ran some more basic ones and what she knew about first. I don't think she is testing for tons of things right now. I wanted more but she said I could just end up with excessive charges if we jump too far at once. I don't think I got any virus titers and I forgot to mention Celiac testing. I should get the tests back Friday or Monday, but I'm not expecting much.

I also wonder if diet could be affecting this or affected my thyroid hormones. I was 6 months in to a ketogenic diet when these symptoms started this time and went off it immediately. The last time it happened I can't remember for sure if I was on a low carb diet before or after the symptoms started or how long. But it may have been 6 months into a low carb diet. I just read that very low carb diets can disrupt thyroid hormones and thyroid hormones can cause paresthesia. However, I don't know if it causes my type of paresthesia.

The problem is I had some paresthesias from leg compression while sitting years before I ever tried a diet like that. Back then it felt similar, but not random and not all over my body. It felt like water running down my leg when I would sit and buzzing in my thigh. I tried asking around to see if this is normal for pure muscle entrapment problems but haven't been able to find a person or Dr. who said they had seen that before. I had also developed a rounded/puffy face at that time which could mean thyroid hormone disruption, which was due to other causes or just from unhealthy drinking or allergy shots I had prior to developing that for a few years. That round/puffy face thing eventually went away after a few years. I think excessive drinking can be one cause of that, but I think I had it before I drank a lot and it was after I got those allergy shots. It lasted a few years either way, though I didn't continue the shots for more than maybe 10 shots over a month or two.

I find this whole thing very disturbing. I'd like to have answers about what is going on so I at least know what I'm dealing with here.

At Hopkins they just did that one test for small fiber neuropathy and then discharged me (also a nerve conduction test, which was also negative, but I had that before), so it seemed like they don't automatically do any more tests. I thought they would get other doctors involved and do tests for things that could cause it, but that didn't happen.

I would imagine that immune tests, hormone tests, and other tests would need to be done in order to determine what is causing it.

I would think that there should be some more organized effort to figure this out based on the type of symptoms. In my case my symptoms present a very specific way and in my case they also seemed to completely go away for over a year! It healed? "It" was inflamed, but minimally damaged? Will this always happen for me? I don't know. So, that seems like a very specific kind of neuropathy, because with some causes/tissues that probably wouldn't work like that.

There must be some clue based on the symptoms (or tests) about where in the chain this is happening even though it can happen anywhere along the chain.

I've also heard about "ganglionopathy". That seems to be a spinal cord thing, ganglionitis or dorsal root ganglia. Maybe mine is inflammation of the DRG in the spinal cord? Doesn't Herpes Zoster live in the spinal cord? I know I have that, but I don't have shingles. Can it ever just become a little active in the spinal cord?

From what I can tell they can't test for ganglionopathy. Or maybe they can do some spinal fluid test and look for antibodies or something, but I don't want to go poking around there unless I have to.

I would wonder why they aren't documenting my type of condition and categorizing with a name so you can identify others with the same condition and figure out what is going on. The problem with that may be lack of clear cut boundaries along a spectrum, but some people must have it just like I do.

Maybe the patients have to start creating names for these conditions. A unique identifier is an important element in order to reference information for analysis.