Progressive Worsening...Please Help

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Progressive Worsening...Please Help

Postby inamp » Tue Aug 31, 2010 3:38 pm

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
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Postby gainsbourg » Thu Sep 02, 2010 9:58 am

Seems like a big coincidence if it turns out you have both hemangeoma and MS. The question is, did these unpleasant symptoms occur before, or only after the surgical removal of the hemangeoma? It would also be interesting to know where exactly the problem area is, because the cerebellum, which is in the region of the brain stem, influences balance.

If as you say, the lesions mimic MS, I'm surprised they don't try putting you on a course of anti inflammatory treatment (whether you have MS or not) to see if things improve. Perhaps they have their reasons.

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