MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
I haven't been diagnosed with MCTD, but was told if my ana was higher I would be. I have had issues for years... hearing loss, raynauds, pains, aches, etc. A couple of years ago my ana was speckeled and 1:320 - my primary thought it was sorgrens. Went to a rheumy and he said, no that's rare, you have occular rosacea. I did have extreme dry eyes and light sensitivity. My eyes have been so dry I now have plugs - it works amazingly! Had carpal tunnel surgery, surgeon said it was really tight in there. Fast forward to January - diagnosed with collagenous colitis, esr 73 and rnp 4.4 and ana 1:160 speckeled. Went to rheumy again, with more symptoms.. itchy hands, slight rash on neck occasionally, more stabbing pain in toes, and needle feeling in fingers. Legs also hurt. Have had a couple of dizzy spells. Rheumy says - "well you look good and you just make a lot of antibodies. If your ana was higher then it would be MCTD." Am I crazy? Every once in a while its hard to walk! And the stabbing pain, although fleeting, is severe. Has anyone else had a hard time getting a diagnosis?
Mary Ann
Did your lab work show you have anti-RNP antibodies? I believe they are a good indicator of MCTD, especially when other antibodies are negative. I don’t think the ANA level matters. But that’s just what my Dr told me...
It’s all confusing!!
Yes my RNP was positive - 4.4. The lab report states anything higher than 1.0 is positive. I wish I had your doctor! :-(
I was diagnosed my first visit. I had high ANA, high RNP and all other negative...only presenting symptom was Raynauds. I’ve since developed other symptoms (joint & muscle pain & hoarse voice). I almost wish I hadn’t been diagnosed or labeled. It made my stress horrible and probably exasperated symptoms :(
I would strongly urge you to get a second opinion, as some one else stated, it is difficult to get a diagnosis. It took me 9 months to find out what was wrong.
Trust your own instincts if you know something is wrong then, keep searching until you find a doctor who can help. I was dismissed many times and made to feel like I was crazy. You are not crazy. I have a counselor I speak to as well. Good luck to you.
Just hearing that some folks didn't get a diagnosis right away makes me feel relieved, although it's too bad it's this way. Sounds like many also have a counselor, nice to be in an understanding group!
High ANA is not a diagnostic criteria for MCTD. This is a misconception that has plagued rheumatology for years. There is only one biomarker for MCTD, and it's positive anti-RNP antibodies.
If you have that, if you have aches and pains in muscles or joints greater than what would be expected for someone your age, and a couple of other symptoms-- say, Raynauds or difficulty swallowing-- it's almost certain you have MCTD.
I think MT summarized the silliness we all hear about this illness very well!
And yes, I liked having a therapist so much that I became one. Now I have a job where I can work 55 hours a week because I can take naps in my office when people cancel! Love my work, but gotta slow down.
Welcome, hope we can be helpful.
Interesting! Then I think I do have it.... lots of aches and pains, a few time trouble swallowing - it was quite scary actually, and serious raynauds. And so tired! All the time... thanks for clearing some things up!
Sounds like you love your job and it's the perfect one for you!
This makes me feel hopeful.... my second opinion isn't till May 15th. Meanwhile I just try to function. One minute I feel great, the next is filed with pain and exhaustion. I'll let you know how I make out next month!