I'm new to this forum. I"m 48. I've not been diagnosed with MS yet. I'm trapped in the is it MS or Lyme or? . Fibro 1998, Optic neurits 2006 with increasing neuro symptoms-MRI's normal 2006 and 2008. Currently housebound since trying my first abx/antifungal (flagy/diflcan for fungal treatment-1 week flagyl, 3 weeks diflucan at end of November). Went from working/living in November (from home with bad brain fog, increasing urination, disrupted sleep, some jerking, and twitching in legs)- to now non functional -it's almost like the drugs/and some herbs/sauna triggered an AI reaction? not sure-but now jerking all over, twitching all over, intense brain pressure, body weak /shaky including neck muscles,insomnia (2-3 hrs sleep on medication), head jerking , very dizzy, problems speaking, burning sensation up back/arms,sometimes swallowing difficulty, eye pain/pressure, and now for the first time numbness on left side that is not going away, left foot not picking up as high as right, balance gate. The head stuff combined with weak/jerky neckband insomnia is almost not bearable. Basically on the couch/floor home bound for past 3 months.
Similar experience but not to this degree 2 years ago on herbs- like an AI flare that laste 4 months-but was functional and recovered but not back to baseline. I feel like treatment has triggered two major MS type neuro flares if that makes sense? Doesn't feel like a "herx to me-since so severe/so long and explosion of new neuro symptoms that developed after stopping herb/drugs?
Anyway seeking a big name LLMD in NY-BUT terrified of aggressive treatment since just a few drugs put me in this state and I'm still on downward spiral with new symptoms weekly. This week so dizzy I can barely walk. All from just a few weeks of drugs at end of November.I have been chemically sensitive for past 20 years and always sensitive to drugs.
Have an appointment for neuro and MRI . no contrast die since I feel like I had reaction to contrast die (first time I had major jerking at night) . I've always been senstive to everything. Scared about getting lumbar punctar. Is that really necessary? I'm so sick now don't want any extra stress on the body.
Sorry for long winded story-
Pursuing all options given how non functional I now am so I want to pursue getting evaluated for CCSVI.
Does anyone know of a location to get evaluated or how to go about it int the Boston area? I also see on Sammy Jo's site that there is facility listed in Albany NY? Would prefer Boston since so sick since Albany is much farther for me. With the highest rates of MS in New England and major medical instutions/research in Boston I would think some facility in Boston would be offering this?
(on LDN very low dose-1.0M since sleep is already bad-and got new symptom like permanent numbness 2 weeks after starting LDN)Also raised bed 3" this week.
Any advice/comments welcome. Trying to climb out of hell.