mixed connective tissue disease and life expectancy

sounds like you are telling my story thank you

I have found you can get a reasonable amount of info aat the Mayo Clinic web page, and it is in very easy to understand wording. I found it very helpfull as I was trying to come to terms with MCTD, with having never heard of it before I was diagnosed with it.

i am so sorry to hear all this i my self have a twin sister who is,NO was diagnosed with MCTD WHEN SHE WAS 11 YEARS OLD NOW WE ARE 19. but you know what i actually love about MY SISTER is that she believes in herself! and she has faith! its heartbreaking cuz u never know what may happen...but look this is something you all have to ask yourself's WHO IS MORE POWERFULL DOCTORS OR OUR ONE AND ONLY FATHER GOD? THE key to being cured is to seeking god! HAVE FAITH THERE WILL BE A CURE FOR THIS WHY BECAUSE GOD IS MORE POWERFULL!!! GOD BLESS AND FROM NOW DONT SAY YOU GUYS ARE DIAGNOSED WITH MCTD SAY U WERE BUT NOW ITS GONE!!!!!!!!!!!!!! REMEMBER WORDS ARE VERY POWERFUL SO NOW YOU GUYS SAY I AM CURED REGARDLESS OF WHAT PEOPLE SAY U DECLARE THAT U HAVE BEEN SAVED AND CURED FROM THAT HORRIBLE DISEASE!!!! I BELIEVE IN ALL OF U GOD BLESSSSSS<3 :,)

I saw you're going to UTMB for treatment. I've been diagnosed MCTD this week. I am my docs first patient with this disorder. I'm close to the bryan/college station area. I'm trying to figure out weather I should travel to Houston for treatment with a doctor who has seen patients with this disease before. Any thoughts?

I am 20 yrs old girl .. I had butterfly rash On my face which is sign of SLE .. along with it i had severe muscle and joint pains .. i also had complaints of some sort of lumps beneath my skin on upper arm and legs and my toes turned blue in cold with small areas of hmrgs .. My ANA test was positive .. Doctor diagnosed me for MCTD .. He gave me Naproxen (NSAID) 2 tabs a day, Hydroxychloroquine also BID and Multivitamin once a day .. I want to knw wat symptoms u guys had ?

I had it for 12 years and I'm doing great.

I was diagnoisis with MCTD in 2002. I'm living a happy life and going strong.

I was diagnosed in 1987. It has been a long road but not a horrible one. I went on dissability in 1999 after giving birth to my daughter. I have had episodes of needing crutches and or walkers to walk but with persistances and patience am able to walk without aids again unless going over a mile :) I have found reducing stress, healthy diet (hard when on steroids most the time ) adequate rest (VERY IMPORTANT   and a good relationship with your doctor are very important. If you cannot develope a trusting relationship with your doctor you need to find a new doctor. To stay ontop of this disorder we each need to get to know our own bodies and under stand the signs it gives us . We need to be able to report these signs to our doctors without feeling of guilt or fear we won't be believed or taken seriously. I have had a wonderful internest caring for me since shortly after my diagnosis. I believe it is because of his diligenceand care I have done as well as I have.

Hi, I also have MCTD and POTs and have been looking online to find answers because I cannot get the help I need in Alabama I'm having to go to the MAYO clinic in Cleveland Ohio for those 2 things and other problems they have created. You have to be careful and see when the info was posted its hard to find up to date info and I'm seriously searching, I had no clue this or any of the illnesses I have could get or become so serious until April 2014 when this sh*t and others kicked in it was 1month of pure hell so I'm trying to get the help. Didn't know I needed. From what I've read MCTD isn't fatal but with me having POTs AND MCTD I stand a damn good chance of getting a lot worse and dying than you good luck

Hello. I have MCTD too and got diagnosed last year. You can join the MCTD support group on Facebook.

my mother has that . she will be 90 years old this year and is going strong..

What are the odds of remisson

I was diagnosed with MCTD in January 1990.  It took several doctors and tests to find out what I had.  I was on prednisone, naproxen and methotrexate for many years and then the symptoms slowly stopped and my doctor weaned me off all the medications.  I went back in for another blood draw and was told I still have the MCTD and it's in remission but I will always have it.  To always be aware of how I feel as it can come back with a vengence. I tried to donate blood and was told by United Blood Services that I cannot give blood because of the MCTD.

I am a newly diagnosed MCTD patient awaiting my appointment to see a Rheumatologist, I also have Celiac Disease another autoimmune disease.

Any information anyone can help me with would be greatly appreaciated at this point.  I am 39, probably had symptoms for awhile but the one that caused the greatest concern and brought to my dr's attention was my hair loss and my blood work came back positive with the RNP component of MCTD.  I do believe I also have the Schleroderma going on with it but will be confirmed with the specialist.

Anyone, please?

I had reynauds as part of my MCTD. I too had hair loss; lost my eyebrows, pubic hair and hair on my head thinned out. But I think the hair loss was from all the meds I took.