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Behçet's UK
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Is it Behcet's?

Hello everyone,

i'm posting on behalf of my sister from Libya as she doesn't speak english, she had very sever episodes of headaches, unconsciousness, tiredness, short loss of memory and loss of appetite, she travelled to Tunisia for tesst resulted in suspected Behcet's disease, she has no mouth or genital ulcers, no skin rash, no vision deficiency, The doctor told her to come back in 2 month time to re-examine the condition but now she is gone unconscious in hospital, no doctor in Libya can advise on any urgent action we should take to control her suffering to prevent any further damage.

can anyone please advise of any reachable specialist at any cost ?

Kind regards.

Abduldaym.

4 Replies
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Hi I'm sorry to say but there are NO tests for Behçet's disease. It is a matter of 4/5 symptoms within a period of time. The main factor symptom for BD is ulcers, but you say your sister does not have any.

I know that most autoimmune diseases involve several consultants but usually the main one is a RHEUMATOLOGIST so that is what you should try to find. The big question is how can your sister travel when she is so poorly.

I wish I could be of more help and I do hope you find the right doctors so that she gets the correct treatment for whatever is wrong with her.

Billi

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Hi Billy,

Thank you for your response, she was injected with cortisol today gradually gaining conciouse, the doctor who diagnosed the symptoms is neurologist but I will seek rehunatoligist as you advised. Much appreciated.

Kind regards.

Abduldaym.

Reply

It is very difficut to diagnose a definite auto immune disease as the symptoms sometimes cross over no cause doubt. But, it is very important to get the right diagnosis to get the correct treatments and medications as they are different in each disease. I do wish your sister is well soon. The best thing you or someone with her can do is.....take photographs of any rashes, ulcers, spots etc. Also start a day to day diary of her feelings, state of mind, pain, fatigue etc etc. And always take the diary and photos and list of any medicines and results of same with you to any hospital appointment,. Also results of any tests and stays in hospital.

Do try to be positive as these illnesses sometimes take years to diagnose. The average time for BD is about 5 years, it took me 12 years but I have suffered with it for over 30 years. Do please let me know how you get on. Take care

Billi

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Thank you for your kind support, she just out of hospital now, we heard of good specilist in Turkey so we are trying to locate one, it's the easiest place to travel to from where she is now if we can get an address of one.

Thanks again.

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