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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nallen06 04/16/2015

Hi everyone. I had been looking for a support group and luckily found this site. I was diagnosed with Lupus in June 2014 and then rediagnosed with MCTD in October. It's been a bit of a roller coaster. Reading about this condition is pretty frightening. I've read a lot of people's comments and posts and its a relief to know there are folks out there who understand what I'm going through. So many close to me tend to forget because it's not something plainly visible to them. I am comforted to know I have somewhere to turn!

operalene 04/17/2015

Hello nallen and good to see you here! It is great to know we are not alone. I just got here recently also and it was the first time I reached out to an MCTD specific group. Before this everyone looked at me as if I had 3 heads (medical professionals included). It took a long time for me to find a definite diagnosis and get treatment. After that it took a long time for me to accept that there are flares and how to live with this. It's a journey, yes but we do not have to experience it alone.

Arlene

auggie70 04/26/2015

Welcome!!! I just read this sight for months before joining or talking there is a lot of good advise and comments that you can relate to that are so helpful. Its nice to read and know your not crazy and its part of the disease. We are all different but do share a lot of common similarities. Good Luck as the first year of adjustment and getting to really know your body take awhile. Best advise REST when needed take the time to REST this is the best medicine--Michelle

Kristina1 04/28/2015

Hello nallen and welcome.
I have also suffered for many years when"my" SLE/MCTD-flare-ups were hardly visible and it was very difficult to make doctors etc. believe, that my symptoms were very real and that there was something definitely medically wrong, even though it was not even visible. It took doctors a long time to realize that... and then I was finally diagnosed...
Reading about SLE/MCTD can be pretty frightening, but there again, one of the difficulties is also that we can hardly ever compare symptoms with each other because the disease "hits" everyone differently...
Best thing for me was to learn about my own SLE/MCTD-set-up and to go from there. Learning about my onw disease-set-up also has helped me to approach medical matters much more calmly, which again had a good effect in avoiding flare-ups as much as possible... It is a learning process and the more we learn about our own individual set-up, the better we can do...
Good luck and best wishes from Kristina.

MToennis 04/28/2015

Welcome! Glad you found us!
Mary Ann

Catalyzt 04/29/2015

Yeah, don't worry too much about the diagnosis-- although I know that probably sounds patronizing as hell.

The disease is NOT plainly visible, it's true. Well, except for today. I look like hell! (Been up too late studying.)

There may be days you forget you have it, too.

Welcome aboard!

nallen06 04/29/2015

Thanks for all the welcome messages and encouragement! I'm so glad I found this site!

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