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...

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smv
smv

i just got diagnosed with MCTD and it's scary. The year before i has been tested but the rheumatologist has said it was boderline positive and sent me home. This time I guess it's real positive. Reading the information about this disease online only intensifies my fears. The symptoms i have are fatigue some muscle aches when I get up from a chair and joint pain in knees at times.  An ultrasound of my kidney shows one kidney is mildly to moderately inflamed I'm going to kidney specialist tomorrow and of course I'm scared.  I was just diagnosed can it already have attacked my kidneys? I'm hoping that whatever it is it's unrelated. I hope someone in this group can answer this question. I'm 58 years old.  I'm glad I was able to find this group. 

MToennis
MToennis
MCTD attacks all of us in different ways. Where ever your weakness is, that is where it will show up. Joints are common, the esophagus seems to be common and for some, the lungs. In my case, the bladder is also and problem and my heart. Lupus will commonly affect the kidneys, so your diagnosis might not be done yet. In other words, there is so much variation in symptoms that it is hard to say for sure, but you need to take care of this, no matter what the cause. Anyway, I have lived 10 years since diagnosis and am doing OK. I really have had symptoms off and on since I was about 15 months old. My mother once said she thought I would never live to adulthood. Here I am at 63 years old! What we do is take care of the problems as they come and try to live a life that is as healthy as we can make it. Good luck with your visit and let us know how you are.
Mary Ann
CarolG
CarolG
I am 55 and just diagnosed. I am really scared as well. Going in for CT scan on Friday at Gastro, I am really afraid.
There has to be a way to deal with this in terms of diet and medication.
Let me know how you are feeling.

Carol G
smv
smv
Thanks so much for the support. The kidney specialist said I'm stage 2 in kidney disease but that is normal for my age and has nothing to do with my disease. Was sent to a urologist to see about a blockage in the kidney and also to a pulmonoligist tonget checked out. Waiting for results for heart tests and I got cleared by the opthmologist to start taking the medication for this disease (can't remember name). I feel like all I do lately is see doctors (3 today). Carol I understand you I'm in the same boat ... this diagnosis is overwhelming. What was your Ana ? Mine was 1:326. Please tell me how your car scan goes. Mary Ann thanks for the positive vibes.
brunob
brunob
a lot of my symptoms were alleviated by taking plaquenil. I have many other issues caused by this but I don't want to scare you.....everyone has a unique experience with this illness.
Katalyzt
Katalyzt
SMV, welcome, and I do not know if it is still possible to search the older threads here, but there is a lot of information on Plaquenil.

I wonder what test was used to determine that you were 'positive' for the disease, but I'm assuming it's anti-RNP. That's a good thing to double check, because that's the one that's more strongly associated with MCTD. Usually it's a yes or no, I haven't heard of "mildly" positive.

But even anti-RNP and ANA levels are not always correlated with symptoms, it's just good to know. I am also 58 (for another day or so, anyway) and like MT I was diagnosed with lupus a long time ago. One of the few guys with the disease, been generally doing well the past three months or so, only so-so for the past two or three years generally. Again, welcome.