Mixed Connective Tissue Disorder

 Just diagnosed with MCTD after being misdiagnosed for more years than I can keep track of. Just moved into a new house and the fatigue and pain are doing a number on me. Just wanted to say hi and hope you are all doing as well as you can be, given the medical circumstances. Elyse aka keesakitty

Hi Elyse,

Welcome! This is a great site. The people here are fantastically supportive. Sorry, though, that you are ill.

I have MCTD also. My pain and fatigue is somewhat under control now after having been on Imuran and prednisone since Sept. I am much better off than a year ago (though still so far from "normal"). Several folks around here have MCTD so ask questions or tell your story. We're all interested and want to be helpful.

Stay Strong,
Sue

Hi elyse I hope you are enjoying your new house. It took me 13 years to get any help and I was so so sick. Still am. They are still working on me. Anyway, at least you have a diagnosis now and hopefully they can get you some treatment to make you feel better. I hope you can get a chance to put your feet up and rest and delegate some of the moving and unpacking to others. The people here are really great and will really help you alot, I'm sure, as they've helped me. I hope you feel better.

Welcome to the forum.  I used to have MCTD, but now is SLE.  Take a good rest and hope to see you more often here.

Hi Elysa:

Just another welcome coming your way. I hope that you begin to start to feel better. Looking forward to getting to know you better.

Take Care,
Barbara

Thanks for the welcome everyone. I have been disabled for 16 1/2 years with a primary immune deficiency, hypogammaglobulinemia(B cell deficiency). It gives me fevers that last for months, chronic fatigue, frequent infections, migraines, skin disorders, etc. Its incurable and I cant take gamma globulin due to severe allergies and asthma. I cant tolerate the gamma as it is made from other human donors. I've been on and off steroids since I was 19. Last year I developed almost all the symptoms of long term steroid use- hypertension, kidney disease, cataracts, diabetes- all within 3 months. Well I cried a bit, got depressed, hit the gym, lost some weight and was dealing with the latest health slump. 3 weeks ago they found lesions in my lungs, plantar fasciitis, tarsal tunnel syndrome, carpal tunnel, a nerve disorder in both hands and antibodies for MCTD. I had JRA as a child and have had these systemic arthritic flareups since I was 12. Turns out it was probally MCTD for years. So now the disease has a name. I feel like I have subscribed to the disease of the week club and I want very much to terminate my membership! LOL! I'm now on so many meds, Walgreens has me on speed dial. On the brighter side, I finished unpacking the living room and the office. Now I have the rest of the house to go. about 200 boxes or so remain. Blehhhhhhhhhhh! Elyse aka keesakitty

My 11 year old daughter was diagnosed in Janurary 2010 with MCTD. We have been up and down and trying all different kinds of medication. She has went through Physical therapy and Occupational therapy. She is doing better but still has a lot of cramps and can not take tylenol, ibprofen, or asprin. It is really hard for her. I am glad that I have found this website it has given me a lot of info. Thank you

What does positive ANA 1:80 (twice) then 1:160 and optic neuritis equal? Any ideas out there? Anyone understand this?  Why do I feel so much worse?