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...
Hi everyone.
I was diagnosed with lupus (positive anti-Smith antibody) and dermatomyositis (positive Mi-2 antibody) this past spring. I felt it explained so very much of what had been going on with my body during the last several years.
I was put on prednisone and plaquenil. Time ticked by ... and only the rash(es) got better. I told the doc I was even feeling a bit worse as far as fatigue. Meanwhile, the protein in my urine went from negative, to trace, to 1+ the last time it was tested. I have now lost ALL sensation in the soles of my feet and in my fingertips. Let's not even mention the tremendous weight gain I've experienced. I was very frustrated.
Well, I switched rheumatologists. I went to a different doctor in the same group, but I had heard he was much more compassionate and listened to his patients.
I had my first visit with him this past Thursday.
He listened to everything. He was compassionate. And yes, he was 'kind'.
He examined me and then gave me his 'take' on things.
First, he thinks I'm out of shape. That's what is causing my aches, pains and discomfort. I guess that's what is making my outer hips/legs burn when just walking down my hallway or up a single flight of stairs.
Second, he wants me to get better sleep. That's what is causing my fatigue and feeling of heaviness.
Third, he wants me to quit smoking (I know I need to). He thinks that is causing my GI problems (colitis, gastroparesis, choking on my own spit due to x-ray proven dysmotility issues in my esophagus, etc.).
Fourth, he wants to do an injection into my shoulder (I have multiple areas of tendon tears and synovitis). My shoulder specialist feels this is due to lupus inflammation in the joint ... and he wanted to do an intra-articular injection under x-ray control to confirm this. The shoulder specialist feels I'm probably heading towards a total shoulder replacement. Well, this rheumatologist wants to do a simple local corticosteroid injection to help with the discomfort and that should be that. "I think the joint is still well maintained. We see this a lot as people age." Oooooo kay.
He is now reducing my prednisone ... and is going to taper me right off of it.
He feels most, if not all of my symptoms, are due to 'other factors'. Not lupus ... not dermatomyositis.
I was jut flabbergasted. I really was. He didn't even mention what might be causing the protein to rise in my urine. I have bright red elbows and knees, and to a lesser degree on my hand knuckles. I have terrible livedo on my legs and inner arms.
I am beside myself now. OK ... I have lupus and dermatomyositis ... but NONE of my complaints are due to that. They are diagnoses that are asymptomatic at this point, I guess.
What do I do???? I feel like I FINALLY got an answer to what was causing my health issues ... and he completely said all of the things were caused by something else.
Please ... whatever advice or counsel anyone can offer would be appreciated ... even if it is for me to shut up and just do what he says.
Posted on 12/28/13, 11:15 am
I was diagnosed with lupus (positive anti-Smith antibody) and dermatomyositis (positive Mi-2 antibody) this past spring. I felt it explained so very much of what had been going on with my body during the last several years.
I was put on prednisone and plaquenil. Time ticked by ... and only the rash(es) got better. I told the doc I was even feeling a bit worse as far as fatigue. Meanwhile, the protein in my urine went from negative, to trace, to 1+ the last time it was tested. I have now lost ALL sensation in the soles of my feet and in my fingertips. Let's not even mention the tremendous weight gain I've experienced. I was very frustrated.
Well, I switched rheumatologists. I went to a different doctor in the same group, but I had heard he was much more compassionate and listened to his patients.
I had my first visit with him this past Thursday.
He listened to everything. He was compassionate. And yes, he was 'kind'.
He examined me and then gave me his 'take' on things.
First, he thinks I'm out of shape. That's what is causing my aches, pains and discomfort. I guess that's what is making my outer hips/legs burn when just walking down my hallway or up a single flight of stairs.
Second, he wants me to get better sleep. That's what is causing my fatigue and feeling of heaviness.
Third, he wants me to quit smoking (I know I need to). He thinks that is causing my GI problems (colitis, gastroparesis, choking on my own spit due to x-ray proven dysmotility issues in my esophagus, etc.).
Fourth, he wants to do an injection into my shoulder (I have multiple areas of tendon tears and synovitis). My shoulder specialist feels this is due to lupus inflammation in the joint ... and he wanted to do an intra-articular injection under x-ray control to confirm this. The shoulder specialist feels I'm probably heading towards a total shoulder replacement. Well, this rheumatologist wants to do a simple local corticosteroid injection to help with the discomfort and that should be that. "I think the joint is still well maintained. We see this a lot as people age." Oooooo kay.
He is now reducing my prednisone ... and is going to taper me right off of it.
He feels most, if not all of my symptoms, are due to 'other factors'. Not lupus ... not dermatomyositis.
I was jut flabbergasted. I really was. He didn't even mention what might be causing the protein to rise in my urine. I have bright red elbows and knees, and to a lesser degree on my hand knuckles. I have terrible livedo on my legs and inner arms.
I am beside myself now. OK ... I have lupus and dermatomyositis ... but NONE of my complaints are due to that. They are diagnoses that are asymptomatic at this point, I guess.
What do I do???? I feel like I FINALLY got an answer to what was causing my health issues ... and he completely said all of the things were caused by something else.
Please ... whatever advice or counsel anyone can offer would be appreciated ... even if it is for me to shut up and just do what he says.
Posted on 12/28/13, 11:15 am
Beth
I KNOW I need to quit smoking. I honestly do. I'm willing to give this a shot and I told him that.
But the weight? Jesum crow. I have been on 30 mg of prednisone for the past 8 months. I was 130 lbs (5'7") when I started and I have ballooned up to 160 lbs now. I have tried so hard to lose some of this but it seems impossible while I'm on these high doses of steroids.
And my sleep?? Well, that's been bad for 20 years. I have tried everything and all sorts of specialists to try to 'right it' back to a more normal amount, but nothing has worked.
I just don't understand how my entire GI system crashed on me about 4 years ago, the rashes started getting worse and worse, my hands started swelling and the knuckles started turning red, my elbows are bright red with intermittent sores breaking out on them, I developed telangectasias all over my face, hands and arms, the protein in my urine started to slowly but surely climb, I feel like I'm walking in water ALL THE TIME, blah, blah, blah ... is not related to any of the auto-immune conditions I tested positive for.
I felt like I had finally gotten some answers after so many years of knowing something was wrong with my body ... and bam, the rug is pulled right out from underneath me. Nope ... it's all due to poor sleep, smoking some cigarettes, and all that weight I put on when they put me on steroids.
I'm exhausted ... so tired ... of trying to get some freakin' doctor to help me. I give up.
I use the Marshall Protocol and manage my symptoms very well. Steroids are poison. Rest in the knowledge that you are right and move on to a new Dr as soon as you can.
I've almost died from misdiagnosis and wrong treatments. Was also told for 2 years it was all in my head. Almost went blind from that bitch, um excuse me, doctor.
I hope you live close enough to a big city to afford you a larger pool of doctors to pick from.
Take good care. I know this is so frustrating, to say the least.
What is the Marshall protocol? Just wondering.
Romeo
Yikes! Plz get to another Doc soon! It's pretty bad the consumer must be their own advocate but they do!
Nancy
She has had very good luck with it, and it sounds very interesting, just requires some money and some monitoring. Biker's been around this forum a long time, and I value her advice. If my symptoms were worse (or more consistent) I would probably give it a go myself.
--Cat