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Hi Janet, I am a systemic sclerosis patient and also have Mixed Connective disorders, both of which are "very rare". 


I know how it is, believe me, to feel absolutely awful and have no one understand why. I also know how hard it is to go on,  I, too spent years without a diagnosis cause my blood work kept moving all over the place.  (I was recently diagnosed by blood with scleroderma and MCTD including intestinal scleroderma).  The  difference is I found another rheumatologist who believed my symptoms and thought it was just a matter  of time till I had bloods that matched the diagnosis.  Try as many doctors as it takes.  It took me three!! 


I'm very lucky because I live in Baltimore and close to the Johns Hopkins Scleroderma Center and will be given a full workup there in Dec. just to give my dr. and I another opinion.  It has made a huge difference to be on an immunosuppressant (CellCept) in terms of feeling less lousy.  I sure hope someone helps you soon, but please don't give up.  I have days like yours when I do absolutely nothing, but we are sick, and sometimes that happens to sick people.  You do as much as you can and that has to be good enough, 


Sending love and healing vibes, Nancy.  

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Hi Janet,


 If you did a topic search on Systemic Scleroderma sine Scleroderma, you may have seen some of my posts (I'm also known as jeannie here). I was diagnosed with this form of scleroderma in 2006. I think what finally got me my diagnosis were the verifiable 'co-morbid' conditions: GI issues verified by a gastroenterologist, interstitial lung disease verified by a pulmonologist, and pulmonary hypertension verified by echo and then a right heart catheterization. I have no skin thickening whatsoever. I only have a positive ANA, never tested positive for SCL-70. I also got extremely lucky in that I live in the same city as National Jewish Hospital, which is the number one lung hospital in the USA and at that time had one of the most sclero-aware rheumatologists working there.


 I think my advice to you would be to get your depression under control first. I also have fibromyalgia and the medication I take for that helps with depression and anxiety as well as pain. You can't fight your own case when you feel hopeless. The next thing I would do is get a consult with a good GI. I’m not a doctor, but I could go on for hours about GERD and oesophageal strictures. It sounds like you might have a stricture and a report of oesophageal anomalies would be useful in getting a rheumatologist to think about 'sine'. I'd do the same with your other symptoms - try and see the relevant specialist. If you can add positive reports from other specialists, it goes a long way. 


It's a tough battle to get a diagnosis. I was willing to consider I was just a raving hypochondriac and needed psychiatric help by the time I got mine. Good luck, take care of your totally understandable depression, and keep fighting. And by the way, tell that less than helpful rheumatologist that rare does not equal never. 

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