Behcet's Syndrome Society
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Been a while!

I haven't been on here for a while and just wanted to say hi. I have had a bad flare up with severe back pain and now hip pain (feel like an old woman). Waiting to hear from my help line Nurse at the Rheumy Hospital but phoned at 9am and still waiting for a reply. I have made a brave decision to change my GP as well! He has been ok but after taking in a urine sample (advised by my consultant ) to be send for microboiology. He poured it down the sink and said he didnt need to do that!!!!! Bloods show I have an infection so instead of investigating where it was he sent me off reducing tablets that have been working for me!!!

I am beyond angry now and just tearful and cheesed off. Anyway hope everyone else is doing ok.

Thanks for listening!




13 Replies

Hello my Angel - I'm just back after an extended break too; this was all too much for me for a little while.

Sorry to hear times have been tough and sending love. As for Rheumy nurses, in my experience they are so busy, what with running clinics and stuff, that it's sometimes then next day before mine gets back to me. But I still think that's better than having no 'way in' at all.

I'm glad you've made the decision to sack your GP - he obviously doesn't understand Behcets. Well, actually, it sounds like he doesn't understand poorly people but we'll give him the benefit of the doubt on that one.

Now I've got a good rheumatologist (I always had a good GP) I'm able to be a bit more relaxed about things because (for most of the time) I don't have to fight my corner.

Now, dry your eyes and make yerself a cuppa (or a stiff gin if you prefer). You still have mates here.



Thanks Di

Unfortunately have dragged myself to work as cannot afford to be be off and OH is at home at the moment so would rather be here anyway! But when I get home a glass of Vino sounds heaven!

Thanksfor your caring words




How are you today, my lovely?


Well had a phone call from my rhuemy nurse and consultant will see me on Wednesday as a day case. Only 2 more days and maybe some answers or meds to sort me out!!!

I have a little more faith in the system than I did earlier!!!




Good - keep us in the loop darling xxxx


Hey I really missed you Angela!

Its been a bit like the grown up version of the school holidays....lots of my fave people were missing on “breaks”

Glad ur back too.... I've been having hip bursitis hell and double golferselbow elbow

Agree with the lovely Di...get shot of the GP, you need one that you can believe in.

Let us know how u get on with the rheumy



Hello, I'm the new girl, a bit of a pain in the proverbial, but glad to have found so many welcoming and lovely folks. Saddened to hear what happened. Thinking of you and sending a bit of moral support. It won't make it right but as I'm now finding having all these folk who care DOES help. Re:- your urine sample, your Consultant should know what happened, although I suspect he already knows which GP's follow his recommendations and which don't. Good luck with a new GP and hope you feel brighter soon.


PS. Quite accidentally several of you have answered yet another one of my problems, hip pain is a huge problem (yes could be 'cos the hips are huge, but apart from that). the pain is often almost unbearable. Had NEVER associated it as part of the big B, Just thought it was old age and old injuries causing problems, x-rays and scans don't show much more than a bit of wear and tear, so frustrated at this. At least, and I'm sorry some of you are suffering with hip pain, you've really helped me. So yet again thank you everyone. You really are good at reassuring me by sharing things, so much less lonely now.


Oh, Jen, the delights to come! You are going to have so many 'aha!' moments - all those niggles and twinges will fall into place. At one point when I was going through the same initiation, for that is what it is, I got so angry. Angry that I'd been worrying about one particular symptom to the extent that my GP was considering all sorts of weird and wonderful cancers - I'm talking about hot sweats and fevers.

Then, I think it was Suzanne on here, told me her vascular consultant said these sweats were part and parcel of vasculitis. Far from being relieved, as I should have been, I was incandescent that none of my medics had told me.

The truth was, of course, they didn't know but that wasn't their fault.


I'm another of those who took a break for a while but there are plenty of us to go round and I think it's important not to become too entrenched and to spend time in the 'real world' too.

Good for you Angela. When we are in pain, or feeling low or angry it can be so difficult to take control and get the medical support we need.Fingers crossed you get what you need on Wednesday and that your new GP will be a good one.

Jennie, painful joints are not uncommon with BD - this is a quote from a Society fact sheet:

"Arthritis or arthralgia (joint pains): this may occur inabout 50% of patients. Some

patients may experience joint pains only without any outward evidence of joint

inflammation. However when a true arthritis is present it is inflammatory as indicated by joint pain, stiffness, swelling, warmth and tenderness. The knees are most commonly

affected followed by ankles, small joints of the hands and wrists and least commonly the

shoulders and hips. The lining of the joints (synovium) has been shown to be inflamed

(synovitis) but the appearance under the microscope is different from other inflammatory

arthritides, eg rheumatoid arthritis. Permanent bone damage within the joint may occur

both on x-rays and at surgery but rarely. There has been considerable debate over the years whether the joints of the spine are involved in the inflammatory process (spondylitis) and although some cases have been described the consensus of opinion is now that spondylitis is not a part of the arthritis of Behçet’s Syndrome."


Thank you again, I had read that but because I had a misspent youth riding motorbikes and ice dancing the medics said I had to expect aching hips and that Behcets was not a factor, on negative scans and x-rays they just said I was being a little bit over dramatic and it couldn't possibly hurt that much.! Of course I first described these things to medics a lifetime ago sadly before the fact sheets, thank heavens that more is known now, but I have found medics rarely update me, and interestingly at the hospital last year it was dismissed again, hence why I prefer to deal with my GP who just is now of the opinion that Behcets can cause so much that he won't dismiss anything. Keep smiling and laughing at my discoveries as I embark on this voyage of discovery, it truly is an adventure of learning, one I'd prefer not to have to undergo, but a shared journey is always easier. Have a good day my friends.


Oo, tell us more about the motorbikes sometime.


Hi, it's the wee small hours, have just returned from a trip doing a talk to a group of people about another charity I am very involved with. Been a bit tiring. Everything hurting so sitting with a cuppa waiting for the relief of analgesia kicking in. Hope it happens soon. Decided to try to change profile picture........failed miserably you now have a partial picture of the cliff face I was standing in front of! Can feel the exhaustion is turning into the usual physical probs that happen when I overdo it, and you all understand that. Anyway, yesterday I managed to give two hundred people a new word to consider, I tentatively explained that I wasn't up to par because of my Behcets!, when asked what it was, gave the most basic of info, and asked people to have a little peek at the society's page on the Internet. It wasn't the time or place for big explanations as it was a charity event for another organisation. But hopefully a few people will be curious enough to look it up and get accurate info. Even if one more person becomes aware it'd be nice. I think there were a couple of folk whose ears pricked up.

I hope you are all ok. and holding up against the big B. you are in my thoughts.

Tigerfeet, the motorbike was one of the early Norton Commandos, 750cc, I loved it and toured a lot of UK on it, sold it when I got married, (should have kept the bike ha!ha!), I also (I suppose rather foolishly) used to hang off a sidecar hurtling round race tracks. Couldn't even hold a motorbike up now. That's if I could find one that could carry the big lump I am now! So now you know you have a really daft old bat in the group.

Be as well as you can be, thinking of you all. Goodnight my dears.


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