Vasculitis UK
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My daughter turned 40 years old in ICU Florida after experiencing rapid muscle loss and then a brain hemorrhage she was diagnosed with cns Vasculitis. She just had a brain biopsy and the results was negative for Vasculitis. I can't help thinking the muscle loss and the brain bleed are related but the doctors don't seem to think so. Has anyone had the same experience? We are happy that it's not Vasculitis but what was the cause! We are back to square 1, no diagnoses, any help would be appreciated.


a newbie

2 Replies

Hi Victoria,

So sorry to hear about your daughter. Has your daughter had scans and a lumber puncture? Unfortunately biopsies are not always 100% accurate as you need to get the right bit of tissue and then have someone experienced enough to recognise central nervous system Vasculitis.

There are a number of neurological diseases that can cause muscle wasting. The most important thing is to see the most expert Dr you can. I have heard a lot of good things about this Dr if you need a second opinion

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Thank you for your reply. She is going to Mayo now and their top pathologist tested the sample. She has had 2 angiograms, muscle biopsy, and lumbar puncture. We have done everything the doctors wanted but still no 100% diagnoses. She and I both have Rheumatoid Arthritis and see a rheumatologist regularly


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