How to talk to doctors about suspected behcet's?

How do you talk to your doctors and bring up the suspicion of behcet's? I know that many doctors do not want you to be diagnosing yourself and look at you like you're crazy when you suggest you may have some rare disease.

But, at the same time, if no one has figured it out yet, should you bring it up?

I have an appointment with my rheumy at the end of the month and I just don't know if I need to ask him about it, or wait until he figures it out on his own?

8 Replies

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  • Hi Wendy, don't worry at all about self diagnosing, i diagnosed my daughters Behcets, i kept on arguing with the hospitals that i knew what she had and they just kept on denying the fact, it took years of fighting with them until eventually they gave in and said that i was right and she does have Behcets and i seem to know more about her illness than they ever did, so don't worry just speak out no matter how long it takes. Good luck. x x

  • Print off the relevant fact sheets, make a bullet point list of the relevant symptoms (as you don't necessarily actually have them on the day of the appointment) and ask for it to be considered - if it hasn't been mentioned before then I wouldn't go with guns ablazing and say that you have diagnosed yourself, but that your research suggests this is what you have and you would like it to be considered please. That's the first step, the next will depend on the response you get. When I first suspected BD I phoned the helpline and they advised me about how to approach my doctor. I would probably have done it differently if left to my own devices and not got very far. The advice I received from the Society was invaluable.

  • I don't know if this will help in any way, but I found my symptoms on the internet and wrote a report (something i was used to doing in business anyway) containing a main objective : To investigate the possibility of having Behcets Disease, Followed by the symptoms that I had and thought looked similar to those of BD. The next part consisted of my basic medical history over the years highlighting things like weird unexplained illnesses and odd skin problems that I could remember leading from childhood right up to the day of my last problem. The next bit was based on my feelings about potentially having BD and how I felt it might affect my lifestyle and if I had actually felt that what I was suffering from had affected my lifestyle so far. The final part was a conclusion of whether I thought I actually did have BD and/or any other examples of other similar diseases I had come across and finally, the name and address and contact details of the BD society and a copy of their reference sheets that I had found on the internet on which I had used a highlighter to mark the different symptoms I felt were relevant to me.

    I know this sounds very longwinded to someone who is not used to writing professional reports but it was something I did frequently when facing a problem in business and unravels the fog of things going throough your head and sets them out into a logical thought pattern that shows that you have investigated and considered in detail the whole BD issue and related it your own medical position.

    The result was that I presented it to my GP who having read it, contacted the BD society who went through a long questionnaire with me and recommended a brilliant consultant in my area to which my GP referred my straight away. After taking his own tests, blood, pathergy, urine, xrays etc... I was given a firm diagnosis and I continue to see the same consultant today more than 12 years later.

    This was just my approach but I hope it may give you some clues on how to approach it yourself or at least give you a little more confidence to raise the subject. As Tiger very wisely says....don't go in all guns blazing but showing you have thought about it and investigated it as much as you can before asking someone professional about it is going to be useful. This may only be in the form of question and probably a lot of them but worth the effort.

    Very good luck hun,

    big hugs xx

  • Sorry ! Should have said that the actual diagnosis took several months not a one off visit that my response above seems to imply. :(

  • I knew there was something wrong with me and had narrowed it down to a few things including Behcets. When the professor of dermatology said that's what he thought I had it was a relief. Later on they asked me if anyone else had thought of BD so I slipped in that I had.

    Also years earlier, when I was trying to get a diagnosis another specialist, whose 'hands were tied' because I was under someone else's care told me to do my own research and start dropping words into conversations with other doctors - so there you are 'from the horse's mouth' some doctors don't mind you asking them 'could it be ...'

    (Hope you understand all the Aussie sayings)

    Lesley

  • I agree with all the above posts. When I first started going to (several) docs with symptoms I didn't know what BD was, and neither did they. I finally started doing my own research and after ruling out all other diseases I found that my symptoms exactly matched BD. So, I joined the ABDA (American Behcet's Society) and Rare Disease Connect Association. They sent me lots of info and talked to me over the phone several times. They suggested I keep a journal and take lots of photos. So, about 6 years ago, I did. I took them to the docs I visited and most were not too interested. I kept searching for a doctor who would LISTEN and believe me! I really didn't care if I offended them with the information I presented to them!

    Finally found a great Rheumy, Neurologist and an Opthamologist who took me seriously, and was diagnosed after 15 years. I still keep the journal and take photos.

    After going to so many, many doctors I get the feeling that a of them are intimidated by BD. Why don't they just tell us that they aren't that familiar with it??

    Be bold, insistant and keep searching. You are the one who knows your body better than anyone else. You are the one who needs help. Don't be intimidated by the doctors. They are just people, some with over inflated egos.

    Best of luck! B. Levi :-)

  • PS On Tuesday I was talking with the new dermatology registrar and saying "I could have hugged the man" when he diagnosed me. He laughed and said it happened a couple of days before - a little old lady was so grateful she wrapped one of the professors in a bear hug!

    Lesley

  • Thank you everyone! It is very nice to hear such encouraging stories! I have my rheumy appointment coming up the end of the month, and if need be I can go to my primary before or after that. I have kept a running list of symptoms, and have a couple pictures of the worst cases of throat ulcers I've had. I think I do need to get into a dermatologist, maybe that will be a good place to start since no one else seems to know what to do about my skin sores.

    I went to urgent care one time when the ulcers in my mouth/throat/tonsils were so bad I couldn't even eat or anything. The physician's assistant I saw gave me an antiviral (which didn't help), some magic mouth wash (which did help) and a script for the oral steroid paste (which really helps and I can use it on the genital ulcers). She didn't know what I had but said "whatever it is, I know I don't want it!" No kidding!!! But, at least she was willing to help me. I still have lots of the steroid paste and mouth rinse left, and use it as needed.

    My rheumy doesn't even want to look, he just asks if I have an mouth sores or not. Last time I was there I broke down in tears and made a fool of myself. But he did end up doing a lot of labs and gave me a steroid pack. So maybe I'm getting through to him how miserable I am. My regular Doctor at least keeps me filled up on vicodin and muscle relaxers since I have a lot of issues with my legs getting super tight and spasming. And sad as it is, the vicodin helps me to live a somewhat normal life. I don't think anyone gets how painful this disease is. My rheumy will check my pressure points for fibro (which are always fine) and squeeze my joints a bit, and always says, well you don't seem to be hurting much today. Yes, I am hurting, everywhere, but my joints hurt when I move them, not when you squeeze them!!

    I think I will spend the week writing out an outline of what is going on with me. I used to be a very good writer, so hopefully I can get my few remaining brain cells to line up and make some sense of what has been going on for the past 5 years since my first outbreak.

    I also have a neurology appointment in July at a teaching hospital, so maybe if I can get the behcet's nailed down or at least on the table before then, they can start looking at neuro behcet's and hopefully save some time.

    Thanks again!

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