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Behcet's syndrome.
4 Replies
fibromite.u.k. - July 10

Has anyone heard of Behcet's Disease or syndrome? Does anyone reading this have it or know of anyone with it?

I saw my rheumy the other day and she mentioned that it is possible that I might have Behcet's. I have looked it up and it sounds horrible, but a lot of my symptoms are the same, but then they are also typical of fibromyagia, so I don't know what to think. She is doing some more tests and I will see her again in about three months.


jeffy.s - July 24

Hi, my mum has Behcet's and although it was very scarey at first (she was diagnosed in the UK 10 years ago) treatment has come so far. When she was originally diagnosed they said that she would be in a wheelchair by the time my little sister turned five. My little sister is now thirteen and my mum is back at work full time. Life isn't always easy for her, but her symptoms have been very well managed with only a few episodes where she was quite sick.

I hope that you feel better having read this :) There is always hope and medically, things are moving on all the time these days. One thing I will stress though is that it is vital to have a good doctor/rheumy who will fight for you, so if you are unhappy with yours and can change, research and try to find out who might be the best person to help you.


fibromite.u.k. - July 24

Hi Jeffy.s, thank-you so much for taking the time to write to me. I am also in the U.K. I still don't know if I have Bechet's or not. My rheumy seems very good and is still doing some tests. I have all the symptoms of fibromyalgia and thought it was that. However, I also keep getting very bad ulcers in my mouth and down below and some other unusal things such as two years ago I suddenly went deaf in my right ear and the nerve had died, so I am now permanantly deaf in that ear. I also have a blood disorder with a long name but it means that my blood can clot up a lot so I have to take blood thinning tablets. I also suffer a lot with my stomach, heartburn etc. I also keep getting aneamia and my doctor can't seem to find out the reasons. I seem to pick up every bug going and was extreamly ill with swine flu for the whole of Jan and most of Feb. Does any of this sound like your Mum? I was worried when I read up on Bechet's because it said you can go blind with it. Please write again as I would like to know more.


jeffy.s - July 24

Hey, no problem. I know how hard things were for mum at the start trying to gather info etc. so I couldn't not respond. We aren't in the UK anymore, moved to Australia a while ago, which shows how much she managed to improve because the Aus Gov won,t let you emigrate if you are too sick/your medication if too expensive.

Anyway, back to the symptoms. My mum is fortunate in that she has had no neuralogical symptoms. She has struggled with the ulcers,mianly in her disgestive tract - ulcerative colitis. These are now very much under control and the only thing she struggles with are her joints, which she is trialing new medication for at the moment. Unfortunately in the early days she did have a small stroke, however she only ended up with slight problems swallowing which has been fully resolved.

I know that some ofthe stuff on the internet is VERY scarey,but I believe a lot of it is worse case scenario. To show you how far everything has come, mum was only diagnosed about 2-3 years into her symptoms because of a chance encounter with a German doctor in A&E. I don't believe that she had any problems with catching everything that was going round, but I was only 9 when it all started. Even now that she is on methotrexate (sp?)which lowers her overactive immune system, she doesn't seem to get sick more than most people,despite working in a hospital environment. She was also diagnosed with having Lyme's disease which lay dormant for years.


fibromite.u.k. - July 24

Hi again Jeffy's, thanks for writing so quickly. It is good to know that your Mum is doing so well and that you are all doing well in Australia. I had forgotten to mention that just over a year ago I was rushed into hospital with a very slight stroke. I was over it in less than a week, all it really did was to make me loose my memory of the last year for a couple of days, however it was very frightening. So it seems that could have been Bahcet's too, although they thought it was to do with my sticky thick blood problem. I have often wondered if I have Lyme, but every doctor I have mentioned it to, seems to dismiss it. I have been ill since I was about 10, when I was always in pain and still am, so I don't know if I might have had Bechet's all that time, or if it is just fibromyalgia. The ulcers have been bothering me for about 35 years! I am one big puzzle to the medical profession it seems, but I would really love them to get to the bottom of it all. I also suffer terribly from restless legs and that is one of the worse things. As well as all that I have an underactive thyroid gland, asthma, migraines and a few other things. I don't think they would all be caused by Bechet's but thought I would list them to see if your Mum has any of these things. I am not seeing the rheumy again for three months as she is so busy and popular, so I won't know any more for sometime.



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