Sending me to a behcet clinic - do you have a story?

Hey there! I had a lot of really nice replies on my earlier post on this website. Thank you so much for helping me!!! I feel supported, something you really miss when you're sick and you can't get a diagnosis.

My doctor is sending me to a clinic with the specialism to diagnose auto-immune diseases like behcet's. He also thinks I could have behcet's. The waiting list is very short there, thank god, so I'll be able to visit within one week I hope (well, that's what the website says).

I'm very nervous for my visit (Again!!!). I pretty much have been nervous for four years now. All the appointments, different doctors, tests, results... I hope this will be my last stop with a nice ending. Nice ending for me means knowing what's wrong with me!! I've already gotten over the idea that I have a chronic disease. I am really interested in having contact with people with the same health problems. How do you handle it? What was/is your struggle? What's your story?

I'm also planning on (if they find out what's wrong with me, and if it's behcet's) participating in scientific research. Anyone did this before?

and------------ writing (a book maybe) about the failing health system, to help and diagnose people who have rare diseases. The truth is that I found this disease myself on the internet, because my doctors didn't have any ideas left. And that's what happens to a lot of patients! Have a story? Share it with me plz. Doesn't really matter what country you're from.

Sending strength, positive vibes and hugs from Holland, xoxo Lieke

3 Replies

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  • Hi Lieke, so happy that you will soon be getting some answers. Please keep in touch with us on this site and let us know how you get on.

    All for now, take care

    Billi

  • Well done for getting your new Dr to listen properly and refer you to the right place. I will be routing for you and hope this will find a solution to your problems. It sounds as if you are in good hands now.

    Did you take the factsheets from the Behcet's Syndrome society with you? If you did I am glad they helped.

    My advice from before was to keep a diary and take photo's of anything visible. Also write a one page history of the Dr's you have seen before and any treatments etc....even if they haven't worked for you. This will be helpful to the Dr that is going to be seeing you.

    Good luck..please let us know how you get on

  • Hi Lieke

    If you are anything like me you could hug the consultant who agrees with you that it is Behçet's. That is mainly because whatever has been plaguing you has a name (and no you are not a hypochondriac or going mad). Like you, in my case I kept researching things on the internet and Behçet's was the closest disease I could get to my symptoms.

    Cheers Lesley

    Ps I've PM you.

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