
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...
Here's why: Lots of us have problems with our eyes. Specifically, very dry eyes-- beyond dry eyes-- that lead to major headaches.
Belepharitis is another common, related problem. Compresses, eyedrops, and the usual therapies don't seem to work very well (Though they are far better than nothing, and Dallas had some luck with these.) My vision is very blurry on some days-- and it feels like a mechanical and not a cognitive issue. Very distracting now that I am studying so hard!
What my opthamologist (sp?!) found was weird white lesions in the stroma. He thought they were Herpes Zoster lesions at first (chickenpox/shingles) because I have had shingles, but realized they weren't. I am due for another eye appointment soon, glad you reminded me, I will ask again. If I find the link between Blepharitis and MCTD-- there's one great article-- I will post it, I will search for it tomorrow if I get a chance.
If you can post any data you get on this, it would be very helpful, particularly if your doc has any thoughts on lesions in the stroma or blepharitis. He may be looking for evidence of Sjorgens... if so, don't freak, sometimes that's bad, sometimes it's not a big deal, my dad has had some symptoms for years and he's 88 and basically fine. Some of these symptoms can be very alarming, but turn out to be transient or don't mean that much.
Thanks for posting, keep us updated... hope those are some useful questions to ask when you see your doc next...
--Cat
Mary Ann
SJS essentially makes you cook from the inside out and you feel every second of it. In addition to the blistering, skin loss, weeks long sickness, and other hideous effects, the SJS did cause me to become photosensitive - bright light kills my eyes now and makes my skin feel a little like it is still burning with SJS. Vision 100% worse. Dementia got worse during that time but eased up after about 5 months.
I know that SJS causes the same damage to your interior as it does your exterior and perhaps he saw SJS damage instead of something to do with CTD? I wasn't up to asking at the time.
It is difficult to pull sentences together verbally and that makes it hard to obtain answers from fast moving docs. Will try to remember to ask next time and post response. Thanks again and talk to ya later!
Sometimes, particularly when I am working with others, it will lift abruptly. Collaborating with a classmate last week, my consciousness felt incredibly strange, felt like I was hovering over my body, but the synapses were firing, we were having a very complicated discussion and it all made sense. I even felt like I was understanding things other people weren't. Weird!
The skin blistering and peeling I have not had-- dry and flaking skin, definitely, but it does not look abnormal. Ah, man, that must be rough! I am so sorry you have to deal with that, and I am glad it has abated somewhat.
Please get your eyes checked because of the Plaquenil, that is important, I know when you're flaring it seems like a million doctor appointments and it's all a waste of time and nothing really works but that one should be near the top of the list...
Best,
--Cat
Mary Ann