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Old 05-01-2012, 10:12 AM   #1
Senior Member
Join Date: May 2006
Location: england uk
Posts: 148
topsy123 HB User
Frustrated with lots of symptoms

I went to see a Rheumatologist today who was lovely. As in her manner was that of someone decent rather than the usual dismissive consultant. I was sent to her on the pretext that I may, just may have Bechet's disease. I have for many years been searching for a diagnosis, as yet nothing. After a long discussion, she isn't ruling out Neuro Bechets but is testing now for Sjogren's syndrome as well as Lupus. I had a test a few years ago for Lupus but it all came back negative. I had a positive schreimers test for dry eys, but that was it. I do get a very dry mouth, but I aslo get a whole bunch of other symptoms, Some of which I didn't really go into. You feel like a hypercondraic going through it all.
However, something I did want to ask was this. I have had a long long history of dental problems. I have lost 14 teeth though abcesses or tooth infections, my gums swell up aswell. I fear I will be losing another tooth soon aswel as another infextion has flared up. I had a lumbar puncture and it came back positive. It showed oligoclonal bands in the CSF but a very high content in the serum. I was told its absolutly not MS, because you don't get the bands in the serum. I did have a lesion on my brainstem, that has gone now, but it caused a great deal of problems in the early stages. ie balance problems, slurred speech, spasms. I get terrible brain fog and very stiff painful joints to name but a few symptoms.
I have this morning had a whole host of blood tests done. Does what I have explained so far come anywhere near to sounding like Sjogren's syndrome?. Its all so very frustrating and I really don't care what the diagnosis is to be honest, but I do care when I am in a flare up and no one can treat me because they don't know what it is. That propably sounds bizzare but I just want to know what is wrong with me so I can get some help. ...Thanks

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