Hi, a couple of years ago I was given a diagnosis of Behcets. My main symptoms were night sweats, aches, dizziness and exhaustion. After going through a few specialists I end up with a rheumi who asked if I had ulcers. I said I'd had mouth ulcers since I was a kid and genital ulcers intermittently since my 20's. No one ever checked the ulcers. For the last year my symptoms have increasingly worsened. My main issue is gi stuff. Waking 2/3 times a night with a severe pressing pain in my upper abdomen, stomach pain, diarrhea and constipation, hot flushes, nausea, reflux and wind, feeling spun out and dizzy with some mood swings. Severe fatigue. My eyelids have been dry and sore, dry mouth and throat (sometimes waking up with it stuck to the roof of my mouth). Taste changes (had 4 months where everything tasted bitter). Ear ache, usually between ear and jaw at back. Stiff neck. Itchy patches of skin. Some like little pin pricks in exactly the same spots which have bothered me for years. Waking with pins and needles type tingling in fingers arms etc. Also what I think is recurring balinitis.
Phew, that's most of it I think. Anyway, after seeing a gastro for a load of tests which came back negative. He says he has no idea what is wrong with me and has given me varying doses of different meds. My primary consultant after mentions sjogrens to him was pretty dismissive. Saying maybe it is but there's nothing you can do to treat it apart from replacement saliva/ tear treatment and then just went back to talking about behcets.
Having looked up sjogrens now, my symptoms actually seem much more in line with that than Behcets. But who knows. Anyway I was just wondering if anyone else has similar symptoms (esp with the GI and abdominal pain or balinitis) and how you got diagnosed or any treatments that had helped.
Just desperately trying to get to the bottom of what's been wrong with me for the last few years but increasingly seems that if you don't put the pieces together yourself, no one else is willing to do it for you. Thanks. Chad