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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/ MCTD Support Group

It All runs together anymore !

mommies4
mommies4
I use to have what I call ( Flares ) where the pain would come and go,for short or long periods of time,leave and come back later.3 or 4 months on a week or so off and then start all over again.

Then it got to hours or just a day or two off and the pain starts back up.

Now I don't know that it goes away at all.Some days are just better then some if thats what you want to call it!

I still have yet to have the test done to confirm MCTD,however I've been like this for 3 years now.I have had many other test ruleing other things out lupus being one of them.they say I have Fibro I was DX'ed with a Pseudotumor or IH 15 months ago and have a LP Shunt.

If I had a panel of ppl sit in front of me and ask What do you think you have,with all the research I've done I would say MCTD would be at the top of my list.

The nerve pain is back in my forarms the muscle pain and weakness almost never goes goes away,& the spasms drive me crazy,there all over my body have been since surgery sept 22,2010.

Is it fair for me to say YES this could be MCTD.. I always ? myself..

thanks everyone for listening !! mommies4
deleted_user
deleted_user
Get the proper testing done. I was DX'd in May. It's very important as you do not know if you have kidney or other brain damages. Please go. It was the best decision I made. I'm still hurting even though I am on Lortab 10, Skelaxin 800mg and plaquenil...Nothing works//but its even worse without them.
Havana
Havana
Ditto what Elvis said. It's hard enough to deal with if you know what you have! Get the blood tests done. After three years of symptoms, why wouldn't your doctor order them?
Good luck.
Sharon
mommies4
mommies4
Doctors have done lots of blood work but not sure if they covered MCTD bloodwork. @ Elvis what did they draw for a DX on you ?

i think with my IH and the complications with it they got caught up trying to fix that,they did an LP but that was at DX of the IH back in April 2010.So what am I or they looking for ? My symptoms seem to match up pretty good and have ruled out most other things.This MCTD is as close that I can find that makes since.

I seen on another post that it tends to attack the lungs mostly is this right ? I have had a rattle in my lungs for almost 3 months now !
for the first time 3 months ago I had a bladder infection that I didnt even know I had ! It did clear up on meds.. It was just out of nowhere. sorry for so many ?'s thanks guys !
deleted_user
deleted_user
I have been in a "waste basket" of autoimmune disease for 8 years. My markers were off the charts but for nothing specific. Until I went to my GP in May, 2011 for weakness and pain in both forearms. With my history she ran a panel that included the MCTD. I had never even heard of it before. She didn't tell me prior to the testing that its what she expected. Definitely have them run the test for it. Now waiting to get into the Rheumotologist. It's tough to get into one here in Utah. Well, a good one anyway. Still have another month. Sorry your in such pain. This disease completely stinks. Good luck and happy Tuesday!!! :)
klwfroggy
klwfroggy
To get a diagnosis of mctd you have to have a positive ANA and a positive anti-u1RNP. They will sometimes give you a diagnosis without a positive RNP, but that usually shows up at some point if they are correct. It can attack the lungs, but not always. Some people never progress past joint pain and muscle weakness and others get serious organ involvement. It can attack pretty much any organ, but mostly the lungs, kidneys and skin. They told me that mctd doesn't attack the ears, but I have all kinds of problems with my ears that can only be attributed to mctd. What you should do is make a list of all of your symptoms to take with you to the doctors and ask them to run the bloodwork for mctd and other autoimmune disorders. You can test negative for ai diseases and still have them, so they might be overlooking this stuff if they ran some of those tests previously. Don't feel bad for asking questions, this is a crazy disease with crazy symptoms!
-Kate