Hi everyone!
I’m new around here - I am a “pre-diagnosis” but things are pointing towards the MS route. I am an RN and I work in neurology, which makes my situation a bit more frustrating. It’s literally my job to know when something is wrong and how to do neuro assessments.
A few years ago, I started having rib cage pain - it hurt to breathe. I was also having shooting pains down my arms for no apparent reason. I went to neurology and got a cervical and thoracic MRI - T-spine showed “evidence of a spinal dural AV fistula” which is very rare. No lesions though. I was sent to a neurovascular specialist who has seen them before and was not convinced. My presentation was incredibly inconsistent with this diagnosis. This turned into a “watch and wait” scenario because he couldn’t see fixing it since it’s probably not even likely.
On my neuro exams, I am hyper-reflexive and I have multiple areas on my limbs of paraesthesias. “is this hot or cold? Sharp or dull?”, asks the neurologist. “lol idk”, I reply, half laughing and crying.
Things were kind of stagnated from then - good days and bad days here and there but nothing crazy.
Fast forward to these last few months, increasing in shooting and burning pains, the rib pain is worse, spasms, I’m dizzy at random, my trigeminal nerve had a painful blowout and now the side of my face is mostly numb, my arms and grasp are weaker, and don’t even get me started on the sleepiness. I also seem to have the dreaded lhermitte sign now, which I didn’t know was a thing until I started doing my own research - I thought this sensation was unique to me, not a “symptom” of something. I’d never even heard anyone talk about it before.
I went back to the neurologist for the new headaches and dizziness (the dizziness came before the weakness), got a brain MRI to which she said looked normal other than a few areas of hyperintensities that COULD be demylenation but it’s hard to tell. Since I’ve also been experiencing an up-tick in anxiety and depression from the new symptoms, she chalked it up to be psychosomatic, even though I’ve A) had anxiety for my entire life B) the physical symptoms appeared first. If I’m hurting more and losing functions, of course, I’m going to be a tad anxious. I tried to get back in with her for the arm weakness but they wouldn’t even schedule me an appointment. Um…I can barely lift my arms over my head, something’s wrong.
I made an appointment with my PCP who was shocked by this - I discussed the possibility of MS based on my symptoms. Agreeable to the possibility, she referred me to a new neurologist. “I’m only trained in primary care so I can’t really make that judgment call”
I decided to come here because it sounds like a lot of people who end up diagnosed with MS experience similar things. I’ve been doing peer-reviewed research and found multiple times: “symptoms may often time be dismissed as hysteria as patients have a difficult time describing them”, adding to my frustration.
So now I’m here to read everyone else’s experiences, maybe feel less alone. I’m tired of the pain and not having an actual answer as to why I feel like garbage.