Met with my new pain management/anesthesiologist yesterday. The diagnosis looks to be Small-Fiber Neuropathy, which if so is unfortunately a lifetime thing.
Plans going forward are as follows:
1) Meeting with a family friend who specializes in testing for peripheral neuropathies. Am going to have a third nerve conduction+EMG done because he is convinced that the last test was not done or interpreted correctly.
They are also going to use an ultrasound and look in my thoracic area while I'm turning my neck to see if anything is being missed.
2) Adding a muscle relaxant (probably baclofen)
3) Meeting with a doctor who specializes in autoimmune disorders. I have already had blood tests and symptoms checked, everyone so far has told me it's not autoimmune. My Dad's side of the family does have Lupus and several other autoimmune disorder however, so we want to definitively rule that out.
4) Going to try Topamax. I'm not too optimistic about this but the anesthesiologist is really pushing for me to give it a chance. I'm already on keppra for seizures and am nervous because I'm so med sensitive and these anticonvulsants aren't the most well tolerated drugs in general...
5) SCS (spinal cord stimulation) device is an option. I have to give it further thought as even the trial is like $15k and I've read some horror stories, granted some had success stories.
6) I finally ordered some Red Bali kratom yesterday to see if it helps. These doctors are so resistant to help me out with opioids, even though I know they are one of the few things that help. I started asking around to find a narcotics dealer because I'm so desperate for pain relief and the medical field is failing me on that front. No luck with finding a dealer yet, so I figured "what the hell, I'll try kratom".
So that's where I stand right now. Would be great if anyone could chime in with advice.