Great Doctor, diagnoses possibly!?: Hi everyone... - Behçet's UK

Behçet's UK
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Great Doctor, diagnoses possibly!?


Hi everyone!!

What started out as a terrible day from pain with mouth ulcers and genital ulcers ended up fantastic. I was able to get the afternoon off of work, and head to the doctor, I was waiting for test results to see if I had any stds or anything. Nothing showed up besides some high inflammatory counts. Finally apologizing for doing my own research I brought up Bechets and how I felt I fit it. The doctor couldn’t believe it(he’s never seen it before) and right away called a Rheumatologist, who said that Bechets might be it, and to put me on Colchicine and steroid cream. Also a referral was sent to him so I’m waiting a phone call to meet with the rheumatologist! I was also sent for more blood test to rule out lupus, but they are leaning more towards Bechets. Oddly the doctor seemed almost thrilled to have come across it.

I’m nervous as heck for the results but can’t wait for some relief knowing what I’m battling.

10 Replies

wow... if only all doctors were like this 👍

Camp1997 in reply to Doryjay

I feel very VERY lucky!! I actually went to a walk in clinic and lucked out.

Stm252 in reply to Doryjay

Yeh. If only it were ever this easy!

Legomum in reply to Doryjay

That is amazing: the power of patient research and doctor collaboration! Are you in the UK?

Camp1997 in reply to Legomum

Nope! Canada

You have been very lucky and I hope you start to receive the proper treatment now! I had to self diagnose too as my GP thought it "normal" to have severe joint inflammation making me immobile for 6 weeks, persistent mouth ulcers for 2 years and uveitis. Needless to say I have changed GPs. Good luck on your journey xx

That's fantastic news for you and you got a Dr to listen and act immediately... mine only took 40 years and a self diagnosis too :-/ for me I did not stumble across Behcet's until 18 months ago and I'm unsure if these many years in between with no help have altogether worsened the condition or not it's not something any of the specialists want to talk about...

Truly hope you start to feel some relief Colchicine works so well for many many people but sadly for me I got a toxic reaction and had to be taken off it after 10 weeks, GP would not give blood tests when I asked for them and only when I became ill until, too late in the process, please if you start to feel ill, if your joints hurt in a stranger way than usual, if you start to get a rash anywhere then get blood tests.

Take care. Gillian

heddyslp in reply to gillianTS

thanks for posting about this. i too tried to take cholchizine and i felt off and only maybe a 15 % change if that in my joint pain. so i stopped taking after about 10 days..then tried again for a week or so and same doc said just to stop. hope you feel better

Please note you can have both Bechet's and Lupus. I have been diagnosed with Bechet's for over ten years and was jus t found positive for Lupus. Each have their own set of goodies along with overlaps. There is now a blood test for Lupus. Tested high positive. Good luck and keep yourself educated. Very few doctors here in the states are familiar with this disease. Belong to a group in United Kingdom that has been most helpful.

What good, news! A lovely doctor years ago told me to do my own research and then start dropping the results into conversation. Of course some don’t like it but in this day and age it is usually possible to change doctors.

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