We pretty much all have this disease! You are operating on old info, thank God! Most people with this live a fairly normal life span. Those with lung involvement have more problems. I was diagnosed over 10 years ago, but I know I had it for much longer. Welcome to our site!
Mary Ann

I was diagnosed a year ago. But my records show doctor noted it 3 years ago.

I just joined the group. February 2017 I began to have weird things happening like my hands would turn white dark purple and red. My muscles would burn at the slightest movement. I also experienced extreme fatigue mainly when I used my upper body,anything over my head would make me go down,out of breath and needing to sit down before I fell down. Balance was gone. My tongue felt like I had scolded it. Sores in my mouth and inside my nose. Extreme pressure in my eyes. Swelling in my lower legs Couldn’t ever carry on a Conversation with out running out of breath. Finally got appointment with a rheumatologist. I was diagnosed with MCTD. The list of things it includes systemic lupus , systemic sclerosis , Sjogrens syndrome, rheumatoid arthritis, Reynards phenomenon, Interstitial lung disease, MS,Gueds, Ok I was blown away. I didn’t have a clue. My rheumatologist Told me I had a very aggressive disease and it could shorten my life expectancy. Iam a 53 year old male. My next plan was to get second Opinion. January 2018 went to Mayo Clinic in Rod Chester Minnesota where they took 34 vials of blood out of one arm that’s a lot.i was there 9 days. My second opinion was I have all these
Auto immune diseases. I now know. Winter was hard was looking forward to summer and now I can’t breath due to the humidity here in Arkansas. I was a very Active person and now I only run in low gear. I no longer have high gear. These diseases have affected my heart,lungs ,kidneys,and the protective covering on my nerves. Iam going to be ok Iam just now learning how to cope with this crap. Any words of advise or support is welcome. Sorry for the long text.

I am one of those with lung involvement. I have been on oxygen for about 8 of those years. I was Dx'd almost 11 years ago. I am at the point of needing a lung transplant. None of us have an expiry date stamped on out foot. My advice is to live the best you can with what you have.....it's what I've always tried to do and I believe it has helped get me as far as I am today. You have to learn your limits and what your new normal is. There will be great days and not so great days, be your own advocate and learn as much as you can, things are always changing.

Beth

Thanks Beth. Iam trying to get use to my new normal. Iam sick I realize this I just don’t want to look like Iam. Iam having trouble keeping weight on. Trying to eat clean and do the right things drinking boost drinks taking in at least 3000 calories a day. My rheumatologist told me I needed to rest more. Maybe so. Take care of yourself and thanks again for your advice. Floorman.