International patients London

Hi there guys,

I visited a rheumatologist last monday. He's ruling out some diseases, but told me diagnosing behcet's is extremely difficult. My gut tells me he doesn't really know how to diagnose this disease, because he immediately started about crohn's disease again. Well, my specialist on Inflammatory Bowel Disease says it's not Crohn's Disease. That specialist is a real good one, and I really trust her. So my question is really, is there like a possibility she consults with the excellence centre in London about my ''case''? Starting medication though in a few weeks if rheumatologist has ruled out those other things. I will be taking corticosteroids then. Also, what kind of skin problems do you have? And eye problems?

Thanks if you reply to me!!! xoxo from Holland

3 Replies

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  • Hi there

    Glad you managed to get to see another Dr and it would be normal practice to rule out other conditions first, before diagnosing Behcets.

    It can't hurt to ask that Dr to contact the Centre of Excellence in the UK as they do give advice to other Dr's.

    A lot of us take Corticosteroids and find it helps us a lot....hopefully you will find it helps you as well.

    The links I gave you before give factsheets about skin and eye problems but not everyone gets all of the symptoms and not at the same time.

    The links to the factsheets again is

    behcets.org.uk/wp-content/u...

    and

    behcets.org.uk/wp-content/u...

    Hope you find the steroids help you and the Doctor you have seen can diagnose you soon

  • Hi, I agree with Andrea, but you must also remember even those of us with diagnosed BD had a long, long wait for the diagnosis and also we all suffer mostly the same symptoms but in different areas of the body and different degrees. You often hear of people going throughout their lives with a possible diagnosis or a partial diagnosis and you mustn't get yourself stressed up about this. It is the same for many autoimmune diseases and you have to have patience. The most important thing is to have a good relationship with a doctor and get treatment and meds. Stop worrying about the name of whatever is wrong and try not to stress, get some fresh air and exercise each day, keep a diary and take photos of your symptoms and most of all when you feel really ill you must rest. I know I may sound harsh but there is no quick fix and you have to accept this but also try to get to see a doctor in holland or Germany or wherever you can who has better knowledge of autoimmune diseases.

    Do take care

    Hugs

    Billi

  • Hi, me again. Just thought you could try seeing a dentist or optician as lots of these have more insight into BD than doctors. There is no definitive steps or symptoms or test of any kind for a diagnosis, it takes time sadly but new meds and research is ongoing and improving.

    Billi

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