Where to get a diagnosis

Hello, my name is Lieke. and I'm from Holland.

I've been ill for four years now. They finally ruled out crohn's disease, but they have absolutely no idea what the problem is then. I have skin lesions such as acne, eye problems/blurry vision and very much trouble with concentration. It seems like I suddenly became a complete idiot, although I was very smart before this. Sometimes I can't even follow a tv show, or write an e-mail when a sound appears, or someone starts talking. I also have inflammation in my colon and ileum and my joints really hurt. Above all that I am so tired all the time!! I was a dancer, but now I am already tired when I go up the stairs. not to mention the daily headaches... Someone pointed at me that it could be Behcet's Disease. But in Holland it is so rare most doctors don't even know it.

Also there is no community in holland for this disease. Can anyone tell me where I can find a doctor or a clinic that diagnosis Behcet's Disease? I am really desperate to get help... Germany or Belgium is also fine. I just want a diagnosis...

I would really appreciate it if I'll get answers from you guys.

Thanks already.. Greetz, Lieke

30 Replies

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  • And I had a year of remission. I just suddenly got better, no symptoms at all. October this year the symptoms suddenly appeared again.

  • Forgot something else.. also ulcers in my mounth! Keep coming back. many of them!

  • Hi so sorry for your pain and trouble. It is very difficult to get a diagnosis for any autoimmune disease in particular Behcets. The average time is 12 years. I don't know how you could get help here but you could ask your doctors to contact a rheumatologist at one of the London hospitals and possibly get more Information to help you. Look on the Internet for hospitals in London and Rheumatologists with knowledge of Behets.

    Hope t his helps

  • Hi Billi, thank you so much for your reply! I've heard that it's very hard to get a diagnosis. Maybe you understand yourself how frustrating it is. Thanks for the tip, Monday I'm visiting a new doctor. I'll ask him if he is willing to gather information. Is London good at diagnosing this disease? Greets and thank you!!!

  • The Centres of Excellance are probably the best place to get a diagnosis and I believe people from other Countries can get appointments there and would probably have to pay...I don't know anything about that and so you would have to contact them yourself and also discuss it with your Doctors for a referral. Once diagnosed your own Doctor could take over your care in Holland, with support from the C.O.E.

    You can access them direct at

    behcets.nhs.uk/

    This would be good to show your Doctor...so he/she could access the information to get the referral process etc.

  • Hi there Greetz

    Don't think I can help you with this one....but I had a quick look online and found the French Association for Behects. They have a contact page which you could fill in and ask the link is:-

    association-behcet.org/

    Also found the German Behcets site which also may be able to help

    behcet.de/

    and International Society for Behcets Disease have a contact email address.

    behcet.ws/menu/40/contact-us

    I also found another support group who list Dr's from other Countries including Germany and found a link to a Dermatologist that has experience with Behcets and an email contact

    hs-foundation.org/wp-conten...

    Sorry I couldn't be of any more help but hopefully one of these links will be able to

  • Thank you so much Andrea! I'm really happy with this information. This way I can contact the organisations that have experience with the disease. I'll ask my new docter on Monday to look into it too. Thanks again, greetings, Lieke

  • I just hope some of it helps you....good luck.

    The other thing you could do for yourself is write a 1 page history of you health problems including Dr's you have seen and any diagnosis/treatment you have been given and if it helped. Also take photo's of any visible symptoms [rashes, ulcers, blisters etc]. Even if they are in personal places, the photo could be disguised so they are not embarrassing. This will help any Doctors when you get to see them.

    Also, on the UK Behcets Syndrome Society page are some factsheets which are also helpful for you to take with you to see new Doctors.......Highlighting any symptoms that apply to you......the link to them is here

    behcets.org.uk/information-...

    Perhaps you could let us know how you get on :)

  • Wow you guys are so great! Thank you so much! Well I'm definately looking into the sheets. And I know one thing for sure, if this doctor doesn't know where to send me, I'm gonna ask him to contact London. And if that doesn't work out, I'm flying to London! So weird Holland doesn't have a society for behcet's and allll other countries do have one... But hey, I have you guys! I'll let you know what the doctor says on Monday! Thanks again, kind regards, Lieke

  • Hi Lauren! Thank you so much for the answer! I'm definately considering it if my new doctor has no idea where to send me. Can I contact you if I can't get any help here? Thanks again. I hope your daughter gets treatment now and that she's feeling better very soon.

    X Lieke

  • Hi Lieke

    I think Billi and Andrea's advice are spot on. I am in Australia and had a lot,of difficulty with diagnosis. In the end I changed gps, and made an appointment to an immunologist myself, which actually got the ball rolling. Perhaps if you ask your new GP to consider either sending you to an immunologist or a neurologist it might help. It will probably cost quite a bit of money but what is more important than your health?

    Lesley

  • Hi there! Thank you! I get the feeling the best thing is to find an immunologist myself. I'm gonna try with my new doc on Monday. As long as one doctor sends me to the other, I don't have to pay for it myself. Thank you again. Greets, Lieke

  • Bonjour, j'habite en Suisse et j'ai eu aussi des problèmes pour trouver des spécialistes. Voici un lien pour avoir des infos sur les centres spécialisés pour le monde entier. Je ne sais pas si vous connaissez, si ce n'est pas le cas, voici le lien ci-dessous. Courage pour la suite et meilleures pensées

    orpha.net/consor/cgi-bin/Cl... de maladies=Maladie-de-Behcet&search=Clinics_Search_Simple&ChdId=703&Clinics_Clinics_Search_diseaseGroup=behcet&Clinics_Clinics_Search_diseaseType=Pat&Clinics_Clinics_Search_country=NL&Clinics_Clinics_Search_CnsType=n&Clinics_Clinics_Search_age=Both&Clinics_Clinics_Search_GeographicType=Cnt

  • Bonjour lililo, Il est bon ici de gens d'autres pays et je vous remercie pour votre aide, je l'espère Greetz trouve cela utile.

    ****translated from Google*****

  • Hi, I'm sorry I don't speak French. Could you might speak english? Or German? Thanks for your response!!

  • Hi!

    There is a Facebook Group: Behcets Disease Support Group Netherlands

    They may have more information for you about doctors etc.

    Hope this helps. Hugs! /Tarja

  • Hi! Thanks, I didn't manage to find one myself! Hugs

  • Hi Lieke,

    Behcet's is very rare and it's difficult to get a diagnosis wherever you are. We are lucky in the England in that we now have the three Centres of Excellence. You can be referred here as they take International referrals - I am not sure if / how you could manage to fund this? I see some of our other clever members have already given you lot's of useful information / links. The Behcet's Syndrome Society also publish a lot of information you could perhaps take to a Rheumatologist / Immunologist locally. I am afraid I do not know very much about the healthcare system in Holland. The important thing is that you are being managed by a specialist (or group of specialists) for the problems you are encountering. If you are having problems with your eyes, it is important that you have seen an ophthalmologist to ensure that you do not have inflammation in the eye / raised pressure in the eye that needs prompt treatment and these problems can arise in people with Behcet's Disease. Whilst some of your symptoms are common amongst Behcet's Disease, they can occur with other autoimmune Disease too. Behcet's Disease is often diagnosed here after other diseases are excluded by screening (blood tests like for Systemic Lupus, Inherited Fever Syndromes, Various other rheumatic disorders) and by a thorough assessment and examination by a Dr experienced in looking after and managing Behcet's. In some people with Behcet's the inflammatory markers (ESR / CRP) can be high especially during a flare of symptoms but this is not always the case and it's different for every person (these tests are also known by other names in other countries!) The best advice I can give you is to keep an accurate diary of your symptoms and take photographs of ulcers / skin lesions / rashes as these can be helpful in making the diagnosis. It took me nearly 20 years from the onset of my first symptom to my diagnosis! To be honest, the "name" of the condition is also less important than managing the symptoms and, again, there is a lot of really useful advice on managing headaches, ulcers, joint pain in the BSS fact sheets. Good Luck. X

  • Hi there thank you so much for your information! It's really helpful. I downloaded the fact sheets and I am taking them to my doctor on Monday. I realise that other auto immune diseases can cause these symptoms but in my knowledge they have been ruled out. I think the smartest thing to do is to find myself a reumathologist and /or immunologist to find out what's wrong with me. My eyes have never been checked out so I guess it's a good plan to see a opthalmologist. Other than that my crp have been way too high for a hundred times now... And you're right, whatever the name is... I'm wishing for treatment. I'm worried you know.. but you'll get that if you were 20 years further to get a diagnosis. Thanks for the info again. Making me feel stronger! Byebye x

  • I live in Switzerland and was very very lucky to get a diagnosis within one month. The most significant symptom that triggered the diagnosis was the uveitis. Might be causing your blurry vision?

    out here, I just went straight to an opthalmologist. Upon seeing that I had uveitis, the ophthalmologist immediately ordered brain scan, and coordinated with immunologist and rheumatologist.

    Wishing you all the best

  • Hi there! That sounds tariffic! Give me one of those doctors please? In Holland they only focussed on my intestine. You're right, I have been worried about my eyes. But they never got it checked out. I'm definately asking for an appointment with opthalmologist or immunologist/rheumatologist. Thanks again. How are you doing these days? Getting the right treatment? I wish you all the best too. Hope you are doing well.

  • Good morning! I sent you a private message. All the doctors listed can speak English.

    Having ups and downs with my disease - this year, it is mainly in terms of fatigue, unrelenting headaches and brain fog. But the mouth ulcerations are almost gone and the uveitis has been sitting in a corner like a little puppy that was repimanded by a stern master.

    Vertigo and low blood pressure, perhaps not related to Behcet, make my days wobbly.

    But much much worse days, I have known - so perhaps I have reason enough to say that I am getting the right treatment. And I am not being sarcastic about this - simply a recognition of the awesome destructive power of the BD beast.

    Kind regards

  • I've read your message, thank you! sorry for the late reply too, I haven't had internet for a few days. I'm sorry to hear you're still having those symptoms. I can relate to the fact that you have felt worse, but well, this isn't the lottery either. I hope you feel better soon.

  • orpha.net/consor/cgi-bin/Cl... de maladies=Maladie-de-Behcet&search=Clinics_Search_Simple&ChdId=703&Clinics_Clinics_Search_diseaseGroup=Behcet&Clinics_Clinics_Search_diseaseType=Pat&Clinics_Clinics_Search_country=NL&Clinics_Clinics_Search_CnsType=null&Clinics_Clinics_Search_age=Adult&Clinics_Clinics_Search_GeographicType=Cnt

  • Hi lillio that's a great website!!!! Thank you very much! I'll ask my doctor to contact that clinics!

  • Hi, for the languages that you can't read go to Google and find a language translator in the language you want (such as French to English), follow the steps, cut and paste the language you want translated and then voila! It might not be grammatically correct but you can get the idea of what is being said.

    Lesley

  • Je ne parle pas anglais malheureusement et j'utilise Google traducteur et je vois que l'on arrive quand même bien à se comprendre. C'est l'essentiel. Courage à tous et Lieke-z j'espère infiniment que tu trouveras des réponse à tes questions et qu'un traitement efficace soit trouvé. Courage à tous. Je vous envoie plein d'ondes positives.

  • merci lilio

    I have googled your reply so others can understand what you have said

    "I unfortunately do not speak English and I use Google translator and I see that you still manage to understand well. This is essential. Luck to all and Lieke-z I hope that you will find much to answer your questions and that effective treatment is found. Courage to all. I send you lots of positive vibes".

    hope this helps :D

  • I am so sorry for your pain and understand your frustration in getting a diagnosis. My son was hospitalized with mouth and body sores the last two years. We found a doctor in the US in Chicago that has behcets experience. My son is taking daily cholchizine medication and prednisone when he feels a flare up coming. I want to find another solution to the prednisone because of its negative side effects. If you find a doctor in your area maybe he can contact our doctor here to discuss your case and come up with a treatment. Let me know I you want the contact info for this doctor. Good luck and God bless, reena

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