I'm still having no luck with my consultants! Still going back and forth with my diagnose's.. I was privately diagnosed last year so now insurance company won't cover me any longer so I've been on the NHS for the past 5months and my new rheumatologist isn't convinced that I have behcets so she is doing more tests on me. When I was diagnosed in the first place my HLAB51 was positive but recently has come back negative? I'm baffled is this possible to change? The new consultant has said in small words that basically my private consultant was just saying it was positive to give me a diagnose's so this has obviously left me feeling a bit confused...
So the last 9 days I've had quite severe diarrhoea, up to the 2nd/3rd day was very mild just cramping and loose bowels once maybe twice a day as normal but Wednesday of this week I woke up around 5am in agonising pain with my back which caused my stomach to go funny and from that day to today I've been going to the loo about 15+ times a day. It is always worse of a night time and early In the morning so I've been up from around 4am for the last few nights. Prior to the diarrhoea I didn't have much of an appiete for about 2 weeks before this happened. Went to GP a couple of days ago and he suggested if it hadn't cleared up within the next day or two then he would want to investigate me for celiac disease as soon as he could rule out stomach bug. I don't feel like this is a stomach bug because of how long it's gone on for and also my history with my bowels as I have IBS. I can't eat with being in agony or being on the loo half hour after. Today a I have eaten around 6pm was plain chicken and pasta still no luck because few hours later I'm in pain again. I wonder if joint pain, fatigue, mouth ulcers, sore eyes and skins rashes (similar to my last post) would be similar symptoms to behcets?
Thank you in advance.
Written by
Soph19
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Hi the symptoms you have could be describing many other diseases. It is so difficult to get a definitive diagnosis of an autoimmune illness as they are so similar but need totally different treatments and meds. It took over 12 years for my BD diagnosis and the average time is about 5 years. I can hear you saying WHY. It's because there is no test or any other certainty for Behcets just that you must have at least 3 of 5 symptoms within a a period of time. Best advice I can give you is......start a daily diary of what you eat, feel, pain, ulcers, fatigue etc etc and take photos of any rashes, spots, ulcers wherever they appear and nite how long they last. Keep a file with all this info and take it with you to any doctor, hospital appointments. I'm sorry but there is no quick fix. Hope this helps
I have had the same stomach issues in the past to the MAX degree then the ER doctor discovered my gallbladder needed to be removed! Since then I've had similar stomach symptoms during bad flare ups with skin mouth genital ulcers fatigue fevers vertigo brain fog migraines blurred vision eye pain joint pain nerve pain etc...like your doctors mine thought i had celiac disease and was baffled when the results were negative, 6 months later diagnosed with Behcet's. Your symptoms sound very familiar to me. I hope your doctors can get you diagnosed and agree on it but most importantly that you find relief. Stay strong!
I tested negative but it was still decided I had Behcets because of my eye involvement. I too had light sensitivity in eyes. Mouth ulcers, genital ulcers, migraines. It was only when I got a retinal vein occlusion that I had a final diagnosis - even though I tested negative. You don't say where you are being treated, but Birmingham and Liverpool have centres for Behcets. I would ask to be seen at one of the centres of excellence.
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