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ohiokavr
@ohiokavr

Posts: 2
Joined: Jan 22, 2019

Mixed Connective Tissue Disease.... maybe

Posted by @ohiokavr, Tue, Jan 22 6:07pm

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?

REPLY

Hello @ohiokavr, welcome to Mayo Clinic Connect. There is another active discussion on MCTD where your post will receive more visibility. I'm tagging our moderator @lisalucier to see if we can move your discussion here. In the mean time you may want to read through the discussion and meet other members with MCTD who share some of your symptoms.

Groups > Autoimmune Diseases > MCTD (Mixed Connective Tissue Disease)
https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

Mayo Clinic has some information on Mixed connective tissue disease diagnosis & treatment here:
https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/diagnosis-treatment/drc-20375152

Are you able to get a referral to a rheumatologist from your doctor that your insurance company will accept?

@johnbishop

Hello @ohiokavr, welcome to Mayo Clinic Connect. There is another active discussion on MCTD where your post will receive more visibility. I'm tagging our moderator @lisalucier to see if we can move your discussion here. In the mean time you may want to read through the discussion and meet other members with MCTD who share some of your symptoms.

Groups > Autoimmune Diseases > MCTD (Mixed Connective Tissue Disease)
https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

Mayo Clinic has some information on Mixed connective tissue disease diagnosis & treatment here:
https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/diagnosis-treatment/drc-20375152

Are you able to get a referral to a rheumatologist from your doctor that your insurance company will accept?

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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.

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