Behcet's Syndrome Society
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Back Pain and Numbness/Tingling

I have had Behcet's for 11 years and I have recently started having severe lower back pain along with neck pain and pain in between my shoulder blades. I also get numbness and tingling between my shoulder blades and will sometimes go down my right arm. My grip is noticeably weaker on my right side. I went to my family doctor because the rheumatologist is booked until March and he doesn't think it is a disc issue. Has anyone else had a similar story? I am wondering if it is just arthritis in my spine or if I am developing NeuroBehcets :( Please let me know what you think!

3 Replies

Yes I have the same thing quiet ofter an the tingling an numbness between my shoulders is such a strange sensation when I ask my rheumatologist about this she simply said well u ave fibromyalgia as well

So it's normal but I don't think it is hope u find out soon what this is a maybe let us no take care x


Hi this post really interests me. I have suffered with BD for 28 years now and am now retired. I took early retirement 6 years ago due to......itchy scalp, terrible headaches at the back of my head, then my neck and shoulders and weakness all down my right side in particular my right arm and hand. At the time my GP was totally uninterested and referred to my ageing, my Prof said it was nothing to do with BD. Whilst on holiday in Spain I became very ill......all above symptoms plus dizziness and extreme fatigue. I fainted and was taken to hospital. They were amazing and took scan of my head and shoulders and lower back. I was diagnosed with degenerative spondylitis C2, 3, 4 and 5......also T2, 3 and 4. In the last 2 years although on good meds have been suffering badly with pain and now have steroid injections. I also have other problems stemming from my back that nobody can explain and it is deteriorating quickly. My Prof now says the itching and headaches is BD but a brain scan showed no abnormalities (thank goodness) but it doesn't mean it is t BD. The parameters of this illness seem to change continually. I find myself in the position where it could/couldn't be BD and being told it's my age.....which I think is just an excuse not to refer me for further investigations . So fight your corner, I don't know how old you are but even at my age and time of life his much degeneration shouldn't be happening so quickly. Like to know what you think and to keep in touch as to experiences and diagnosis, meds etc.

If you have any questions and want to know more please reply privately.



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I've been weaning myself off steroids and, not surprisingly, I'm suffering increasing pain. Back pain - lower back pain, pelvic pain and shoulder and neck pain. I also have degenerative spondylitis - C2,3 and 4 - which my last rheumatologist said was the cause of my headaches. He didn't believe in Behcet's headaches. My current rheumatologist does think my headaches are bechet's induced and we are currently exploring meds to help them.

However, when I told him about my increased back pain and asked if there was anything to replace the steroids as this was obviously the issue, he opined that the problem was reducing the steroids was unmasking 'the ageing process' - the cause of all my current pain. I will be 60 next year so, yes, I expect some pain but not lower back pain so severe it makes me nauseous! Sometimes I despair


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