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Tue, Jan 22 8:03pm · Mixed Connective Tissue Disease.... maybe in Autoimmune Diseases

Thank you! I didn't know there was a group. My doctor looked very hard to find outside rheumatologists covered by my insurance, but couldn't find one.

Tue, Jan 22 6:07pm · Mixed Connective Tissue Disease.... maybe in Autoimmune Diseases

Hello, I just found this group online and I’m hoping there’s someone who can give me some encouragement. I have lived with chronic pain and G.I. issues for several years, but one month ago I began to experience symptoms that I now know are Raynaud’s syndrome, red rash-like discoloration on my face, feeling dizzy, and extreme exhaustion.

I am 45 years old and I have always been extremely active. I hike regularly, eat healthy food, don’t smoke, etc. I was go, go, go until a few weeks ago when I had a brick wall. I have had to take a leave of absence from work because I cannot even make it through the morning.

My doctor did lab work which showed I was positive for ANA at 1:1280, so he sent me to a rheumatologist. She was very dismissive of my symptoms but ran more labs, which found that I have a high level of the RNP antibody which is a marker for Mixed Connective Tissue Disease. But she is still dismissing my symptoms! She thinks I have postural tachycardia syndrome, making my blood pressure drop when I stand up. I do not only have symptoms when I change position! I asked about all of the symptoms I am having and she said she doesn’t believe they are necessarily related. There are very few rheumatologist covered by my health insurance, so I don’t know what to do.

Does anyone here have mixed connective tissue disease? What was the process you went through for diagnosis? And what are you doing to treat it?