Five years ago, doctors removed a cavernous hemangioma becuse it was shown to have burst several times. My condition is progressively worsening to where I (F, 39) don't have any balance, have painful "electric shocks" in my arm and leg (among other things such as neuropathy, double-vision, etc.) I have gone from barely needing a walker topretty much needing a wheelchair. I had an MRI and docs tell me the lesions are from the angioma and just mimicked MS.
Even after removal, I keep having "stroke-like events".( "attacks" when the weather is warm and it is 2-3 days before my menstrual period). I now feel as if I have to "convince" Neurologists that these are happening and my condition is worsening. (I've seen four different Neuros.) Because the hemangioma was near my brainstem, Neuros think i am trying to "dramatize" my conditionand that new things aren't really occuring.
I have made a list of symptoms for Neuro visits and made timelines, etc. but nothing is working. Other docs (Endocrinologists, Rheumatologists) have said it looks like Multiple Sclerosis. What can I do to have Neuros consider this for my quality of life is non-existant. Do you think it might be MS? Should I ask for a spinal tap?
Thanks for your time