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Brain Bleed - Central Nervous System Vasculitis

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Old 06-21-2008, 08:28 PM   #1
Join Date: Jun 2008
Location: Indianapolis, Indiana USA
Posts: 1
caroljean HB User
Question Brain Bleed - Central Nervous System Vasculitis

I am new to this board. I recently had a bleed to the brain (between the two lobes). This was discovered after I had an "ax splitting through the head" pain that occurred while at the check-in desk at an airport. I have now been diagnosed with Central Nervous System Vasculitis (inflammation of my brian's blood vessels). Is anyone familiar with this? I was in the hospital, but I have not gone to the doctor yet for my first recheck.

Last edited by caroljean; 06-22-2008 at 12:45 AM. Reason: sp

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Old 08-21-2008, 06:32 AM   #2
Join Date: Aug 2008
Location: United States
Posts: 2
julez68 HB User
Re: Brain Bleed - Central Nervous System Vasculitis

how scary... i am so sorry.
my daughter who's 10 was diagnosed last year with vasculitis (hypocomplementemic urticarial vasculitis) it's a very rare, systemic autoimmune disease which can effect any of the blood vessels (and organs) at any time...
the most important thing we found when dealing with vasculitis is prevention of inflammation with meds...
usually in an acute case the drs will first use high doses of prednisone (sometimes in combo with others) ...and then decrease over time.
my daughter has been on plaquenil for over a year in combo with dif meds-- right now she's on an antihistamine + plaquenil + methotrexate-- so far 10 weeks in no sig improvement,,,, yet we just keep trucking on.
sorry to babble, the most important thing for you is treatment... and support. johns hopkins in MD has a wonderful vasculitis center... and there are other vasculitis organizations that can offer education and support-- more and more has been available for CNS vasc. (unfortunately very little is known about HUVS)
hope we helped even a little
best... julez

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