[Question] I’ve become a medical mystery and I don’t know how to effectively get help

To put it very mildly, I’m in a really bad way emotionally because of this and I’m running out of ideas. Any ideas are welcome—specific to symptoms, or just generally how to deal with having a problem and not being able tot get diagnosis or treatment.

TL;DR: I’ve been having paresthesias and neuropathic pain over most of my body, but in shifting locations, since March 30th of 2022. (Paresthesia is like the sensation of a limb falling asleep, neuropathic pain is like that but most of a painful prick or electric shock-like feeling). I’ve seen my PCP, ENT, psychiatrist, neurologist, dentist, physical therapist and message therapist, but I don’t have a diagnosis.

Longer version: On March 30th I work up with a knot (TMJ) in my left jaw and paresthesia in my left leg. I also had dry needling done on my left hip that previous day but a professional licensed practitioner (someone who should have not done a lot of damage).

My PCP did a lot of blood tests (including b12, b6 and ferritin serum). All of these were normal. He able to feel the knot in my left masseter (jaw muscle). Referred to ENT, Neurologist, Dentist.

I got an acrylic night guard for the TMJ from my dentist.

ENT was kind of a jerk and was like “I don’t believe in TMJ treatments other than night guards—not sure what paresthesias are about.”

PT was most helpful. Found limited mobility C3-C5 on left side of neck and limited mobility L5-S1. Thought to could be Radiculopathy—which still makes the most sense. He did some massage kind of things to try for improve the mobility, but didn’t seem to make much of a difference.

Neurologist— suggested it was because of bad sleep hygiene and anxiety (both of which I have and take Rxs for). and x-rayed my neck. While I was bent in on the tight side the radiologist didn’t see anything worrying. Doesn’t think it’s radiculopathy, but I don’t know that he’s really done enough imaging to rule this out.

I have an appointment to see a TMJ specialist but can’t get in to see him until December.

Psychiatrist is nice about wanting to give me more medication, but doesn’t have many ideas.

Message therapist gave me a nice neck massage, but I don’t think it helped much.

I have a good relationship with my PCP, psychiatrist, physical therapist l and neurologist from previous issues. Have seen the ENT before and he’s always kind of been a jerk, but he must be a good enough doctor otherwise.

Circa 3-4 weeks ago, the knot in my jaw had healed and things slowly got better, to the point where the paresthesias almost went away, but they came back these last two weeks along with another bump in my left jaw.

No one seems to think the TMJ could be causing all of this, but it see seems to correlate. I don’t know neuroanatomy well, but the pain and paresthesias seem to correspond with dermatome areas, but I’m at a loss as to how all of my nerve areas could be that jacked up and different areas at different times.

Maybe related two things (1) I probably had a second case of chicken pox in March of 2020 or it was Covid with a varicella-like examthem which I saw some case studies published on back then. (I had chicken pox in like elementary school 30+ years ago, but for the examthem never got a solid diagnosis in March 2020 as to what it because everything was shut down and there were no Covid tests—it could have been Covid with a varicella-like examthem). It wasn’t shingles, it like was chicken pox all over again or something just like it. Got it after coming back from Israel—maybe a West Asian strain? I know that apparently can mess with your nervous system. (2) I had megavitamin b6 syndrome in mid 2019. It took about 7 months to fully recover, but did recover.

Okay… so… any ideas? What would be your next steps? Either specific to me or just in general in this kind of situation?

Any help truly appreciated.