Diagnosed during my first episode?!

I'm a 42 year old woman in the U.S. and I just received a probable Behcet's diagnosis yesterday. Prior to Christmas Day, I'd never had anything like this, but managed to wind up with the hallmark symptoms except for vision problems since then (huge mouth/genital ulcers and EN along with arthritic pain in my feet). Apparently, the list of things that can cause this chaos is pretty short which is why he's fairly certain it's what I have.

I spent most of January either in bed, in the ER getting fluids or begging for help at my primary doctor's office. They kept telling me it was a virus that needed to run its course and showered me with painkillers so I could swallow water. Then I was sent to an infectious disease doctor who tested me for what seemed like every virus/bug there's a test for and came up with nothing. Eventually, the ulcers started to heal and he shrugged his shoulders and told me to call him if I started to get worse again or if the EN continued. Well, not only did it continue, but I also developed a quarter sized pimple-like thing on my face (that I thought was EN at first) and then woke up with pain and swelling in my feet so I called. He immediately sent me to a rheumatologist for a consult and I walked out of the clinic with a prescription for colchicine and instructions to research Behcet's so I can bombard him with questions at my 6 week follow-up.

Not sure if I should be thankful I ran into a couple doctors who recognized the combination of symptoms or be skeptical since I haven't had more than one episode. All I know right now is that my feet are killing me, I'm pretty much freaked out and that this has been the most miserable/painful month of my life (I'd rather break my leg again)! Honestly, I think I'm in shock at being told I probably have a rare disease...

3 Replies

  • Welcome to the forum Folkgirl

    Amazing story and good work from the Doctor and Reumatologist who saw you. It must be a massive shock having been through such a dramatic time with your symptoms and then within a month or two to being diagnosed.

    So many other people have a merry go round for some time [even years] to try and get a diagnosis, by which time they can have become very ill. Then this makes it more difficult to treat and get on top of.

    The good news for you is that it has been found early and you have a good consultant to help you get on top of this quickly.

    Good luck with your treatment and research for questions to bombard him with...I wish my Doctors would ask me to do the same thing.

    Feel free to ask away as I am sure there will be someone here to listen and help

  • I can only agree with what Andrea has said and it is good that they have decided what is wrong so quickly as there is no test for BD just good doctors who can spot it. It was 12 years before I got a diagnosis but over 20 years on I am still getting on with my life. It is a shock but you must stay positive . Tips I would offer are keep a daily diary of symptoms, pain levels and feelings. If you have ulcers or lesions anywhere take pictures so that you can show them if symptoms have dissappeared before your appointment. Coca cola works well for ulcers in mouth when you can't even take water, it seems to soothe but also keeps you hydrated. For mouth and other ulcers anywhere a CLENIL inhaler and a spray are always good to keep on hand. Puff or spray the area 3/4 times per area 3/5 times daily reducing as the flare ceases. Best results if you start this at the very onset of ulcers.

    This site is also invaluable for tips and advice but importantly for chatting on good or bad days there will always be somebody here to help.

    There is life with BD but it's upto you to be strong and take each day as it comes.

    Hugs and Smiles


  • Thank you for the kind words! The more I read, the word "probable" seems like it will be replaced with "confirmed" - I've also got the acne-like lesions on my legs that are not like anything else I've ever had. Seems like I'm just flying down the list of symptoms and I'm really worried about having to go through future flares. So thankful for the existence of groups like these to offer support and info along the way!

    The most craptastic thing is that I'm now in trouble at work. In 2008, I spent 3 weeks on my couch with a PIC line in my arm due to pregnancy hyperemesis and in 2012 I missed a few weeks after breaking my leg playing roller derby (spent a week in the hospital and then couldn't drive because it was my gas pedal leg and I was on a lot of pain meds). Now, because of what's just happened, my boss is calling all these unrelated incidences a "pattern", albeit an unlucky one. I work for a small investment advisor firm - they love me and love the work I do, but because the company is so small and the risk on my desk is so high, I've been told that I can't miss anymore days unexpectedly or they'll have to "look at other options for the desk." I don't even have any employment law protections because the firm is under 50 employees (the U.S. is horrible when it comes to workers' rights). So, on top of the anxiety that comes with learning I likely have a chronic disease, I've got this stress to deal with, as well. They're going to review my attendance issues in 3 months. Part of me wants to just tell them what my doctor suspects I have and that, if I do have it, I'll likely have similar flares in the future. Just get it over with so I'm not worrying about it anymore. But there's so many "if's" and unknowns right now. With the luck I've been having, they'd decide to sack me and this would turn out to be some one time freak occurance. Not saying I wouldn't welcome not having BD, but I really love my job and the people I work with. UGH!!!!

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