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topsy123 05-01-2012 10:12 AM

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

sjogrens 05-01-2012 11:53 AM

Re: Frustrated with lots of symptoms
Yes, that actually sounds exactly like Sjogren's. In fact, quite a few Sjogren's patients are originally told they have MS due to the fact that Sjogren's can cause neuropathy problems (peripheral neuropathy, autonomic and CNS involvement). Joint pain and swelling is very common with Sjogren's as well as debilitating fatigue, gastrointestinal problems, hair loss, skin rashes, lung issues (interstitial lung disease and/or non-allergic asthma), muscle pain, and less commonly - liver or kidney disease and pancreatitis. For many people with Sjogren's - myself included - this disease is much more than dry eyes and dry mouth. Sjogren's is a systemic disease and can cause all sorts of problems in our bodies, unfortunately.

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