Vasulitis or Behcet’s : My Brother in law is... - Behçet's UK

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Vasulitis or Behcet’s

Ashvini profile image
4 Replies

My Brother in law is suffering from auto immune disease Doctors say it’s is cerebral vasculitis as it has affected his brain now. Initially he has loss in vision around 1 year back. His vision is almost lost now and problem in walking . He also forget people and things. MRI shows clotting in brain. Doctors says it will take time to recover. He is on steroids from last 1 year.He lost his job because of his illness.Is this disease curable pls suggest what shall we do.

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Ashvini profile image
Ashvini
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4 Replies
DevonLottie profile image
DevonLottie

Hi. I'm sorry to hear about your brother in laws diagnosis. I don't have cerebral vasculitis so can't give you any advice except to ask whether you have found the vasculitis uk website? There is lots of information there on the types of vasculitis and their treatment: vasculitis.org.uk

Guna1003 profile image
Guna1003

I have vasculitis and it is not curable. It's painful and often times relentlessly. Steriods were the only thing that kept my symptoms tolerable. Unfortunatly steriods are bad for you if used in lenth. The only other thing I've found to help the pain is CBD (an oil based extract from derived from the cannabis plant). This extract has no TCH and can't give you a high feeling. It does not have to be inhaled. There are many ways to ingest CBD such as capsules, oil drops or topical rubs. It works fast. It's pricey but worth it. I hope your brother in law can get relief and a solid answers soon. Sending healing vibes his way ♡

Frustrated2 profile image
Frustrated2 in reply to Guna1003

Guna1003 did you try anything else before the CBD oil?

Ashveer profile image
Ashveer

Hi Ashvini, we are from India, and I think we communicated before, our son has brainstem/pons lesions, paranchyml Behcets, (the most serious of behcets), from you post, it seems he has non-paranchyml CVT Behcets, which has good prognosis w/steroid, but our Son has some disability now w/speech/right side weakness/loss of half of his left eye vision, and they are trying to keep on azaithporine for most of his life to be honest, and I am his mother worried...you may consult Dr. Gulsen Akman-Demir, in Turkey, she is foremost specialist in Neuro Behcets - her expert knowledge is immeasurable, you can find her clinic online, and I highly suggest that you call her clinic and have 2nd opinion....best to you..

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