Mixed connective tissue disease

I know I posted about this before, but can't find the post- it may not have been this board.  I have been dx with mctd.  I have to say it scares the heck out of me.  Has anyone else bee diagnosed with this?  I feel like I am on borrowed time and I can find nothing positive about this.  I can find plenty however, that states it can affect every organ of the body and death usually occurs due to heart and lung problems.  I am scared and just need to vent and get some reliable information from anyone diagnosed or knows someone diagnosed with this disease.  
Angie

[msnova74]

I have MCTD and have been diagnosed with it for about 9 years.  It doesn't need to be a death sentence.  It is quite treatable and controllable. You just need to stay on top of your condition.

I have an extremely healthy heart and only mild asthma in my lungs.  My MCTD seems to attack muscles and connective tissue (tendons Ligaments and cartelidge)

I work full time and have a 11 yo child.

I have to monitor my health very closely.  I also take immunosuppressants.

It can go into remission (like any other autoimmune disease)  Mine currently is.

The important thing is to find a good rheumatologist.

Hope this puts some of your fears to rest.

T

[NWFibroLeaderJenna]

Hi,
Just wanted to reply back to you Angie and "T" who posted above. I am like you guys to..I consider us anomallies (spelling?). I have UCTD...Undifferentiated connected....blah blah. So basically with me, I test postive for the ANA, most of the time on my blood tests, but don't have all the Symptoms of Lupus, or Sjordens, or any of them. But I have a lot of chacteristics of a bunch of different Autoimmune diseases, and it may develop into one of them, it may not. I read that MCTD is simmilar. I feel lucky that I found a doctor who caught this on one round of blood work when I was 32 yrs old. I am 35 now. I have a long life to life, and I am going to fight this stuff all the way.

I agree with what "T" said above, just watch your health closely, get your blood tested every 3-4 months, or what your doc recommends, they can see if things are flaring up or going out of wack by looking at your ANA and Complement number. Those are the only 2 ones my Doc and I really talk about. Stay informed ask questions! Demand answers! Never be afraid to ask your doc something. I come in everytime with a whole list, and  check them off as he answers them during my check ups.

I have a good Rhumatoidaologist, and a few other docs, and thats key too.

I am on Plaquinil and have to take Prednizone from time to time, when I flare up. I have a hard time managing pain....that;s my biggest problem. I also have Fibromyalgia. So sometimes when I get sick, or hurt I can't tell which illness is acting up....no fun.

I work very semi-part time, but I pace myself. My body pays for it I over do it. But really, it is all controlable. All my organs are fine. I have mild asthma too, but I had that long before I was diagnosed with UCTD. I think if something like this goes for years untreated then you can see organ damage, but there is good modern medicine out there to prevent our bodies from attacking our immune system.

I think most people start on Plaquinil, for several years, then move to immunosuppressent, like "T" is on. At least that is what I think I have read on the internet.


You will be fine, just get lots of rest, keep your stress level as low as you can, get a good Rhummy and monitor your symptoms.

I hope this helps,

Jenna