- CASE FILE
Looking for help after 4 years of dead ends. Neurological symptoms that point to MS but MRI, LP, and evoked potentials all negative.
ABOUT THIS CASE FILE
I began having hand tremors approx 7 years ago. Tinnitus began around 5 years ago. About four years ago, I began severe bouts of dizziness along with “seizure” type episodes where I would get really dizzy then feel as if my entire body would have what I could only describe as a cold chill (without being cold). I would be fine after these episodes. ENT cleared me- no vertigo or inner ear problems, but she was concerned with MS. I had an MRI but no lesions were found. She referred me to our nearby large, well-known medical school/center MS center for further investigation. Over the next few months, I had a cervical and lumbar MRI and labs for at least 20 mimicking conditions/diseases, all of which were negative. Was then sent to rheumatology in the same facility who found nothing. Neurologist then sent me for tilt table test and was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome). After waiting almost 1 year for an appointment, was able to see the cardiology specialist at the same facility. She attempted medication treatment but it didn’t help. She ended up telling me that “they make good medications for anxiety and stress” and that I needed to realize that I had a “chronic illness” that I was going to “have for the rest of my life” and I “needed to find a way to deal with it”. All of this even though POTS didn’t explain all of my symptoms. I ended up researching and finding a dysautonomia specialist who did autonomic testing and made the appointment myself when the cardiologist would not. Had to wait another 6 months for that appt. Meanwhile, my symptoms were gradually getting worse. Short term and long term memory loss were big problems. I ended up having to quit my job at a state call center because of mistakes that I was making and repeating myself to customers. Not to mention the pain and fatigue that I was dealing with. My primary care physician was still concerned about MS so she sent me to another neurologist. I was advised there that my exam seemed to show signs of MS. I then had a lumbar puncture and evoked potentials. Was told (after I had to repeatedly cal back for results) that both tests fell “within normal range”. Back to square one. I still had my appointment for the autonomic testing with the new neurologist. There, I was tested and found to have vagus nerve damage, but they could not tell me what was causing it. Also had more labs done there after he reviewed my chart and checked what first two neurologists did not. All of those labs were negative as well. Shortly before this appointment in July 2017, I had a bad balance episode while standing- felt as if I was trying to walk up a steep incline while being pushed against at the same time. For the next year +, continued to see my PCP with symptoms still worsening. She wanted me to be checked for EDS (Ehlers-Danlos Syndrome). Saw a geneticist at UVA who did the testing in Sept 2018. Of the 17 types of EDS, only some have tests. I tested negative for those. In early 2019, memory/cognitive issues worsened and had 2 more “balance” episodes of being pulled down or
To the side. One lasted 3 days. My PCP spoke with the head of neurology at the facility in the research triangle where I initially had the LP done. She is still concerned it could be MS, and I may be in what they consider the “black hole” where it may not show lesions for years. He has agreed to see me and I go in October. I’m just concerned that if he doesn’t think it’s MS, then I’m back at square one. It’s frustrating to go from being an active, intelligent person, to someone who gets worn out doing nothing and can’t remember how to spell her granddaughter’s name some days 🙁 Looking for any help or insight!