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...
Warning: this is long! I wanted to say hi and get some of what I've been experiencing off my chest. My family doesn't quite understand why I've been so tired lately or why I don't seem to be my energetic self. So, to give you my story:
I haven't been officially diagnosed yet by a rheumatologist, only by my PCP. I'd been having issues with fatigue, joint and muscle aches, facial flushing/telangiectasia on my face. My endo credited it to my Hashimoto's and weight. This past year, I've developed a whole other set of issues, and they've recently expanded. Originally, I saw my gyn for a vibrating (similar to a cell phone going off) feeling in my pelvic area (dx: pelvic floor dysfunction). Once this started, then I would have heartburn, reflux, and abdominal cramps that extended to about mid-thigh and would have a numb/achy feeling to it. GI doc said I had some inflammation and probably IBS. Along with the pelvic and GI issues, I developed palpitations that would keep me up at night. Cardio said it may be a vagal response to the other issues. Anyway, those started to settle down and I semi returned to normal. Then, I caught some sort of respiratory virus and it all went down hill. That's when I started having muscle and joint aches, headaches, and was so tired I couldn't even think. I developed this rash above my eyes that look like little bites and is sometimes itchy, dry eyes, dry mouth, and my tongue feels like I burnt the tip. I have allergies as well, so I thought that was causing some of my issues.
Anyway, my PCP ran a slew of tests because I was miserable. My positives that came back were my WBCs (which have been steadily elevating over the last year or two), ESR, CRP, ANA screen (ANA negative- it was positive a few years ago presumably from the Hashi's), RNP and TPO (Hashi's). My PCP said she suspected MCTD, (which is quite scary if you read everything online!), but wasn't sure about the WBCs. She referred me to a rheumatologist and hematologist. Unfortunately, that was the end of May and the rheumatologist cannot see me until February! I called around my city, and the soonest any can even look at me is mid-October. So I have a couple of questions I was hoping maybe to get help with. Anyone else have these symptoms or am I alone in some of them? Anyone know of a rheumatologist in the KY/IN/OH(Cincy)/TN(Nashville) area that doesn't take months to get into? I'm sorry this is so long, but it does feel good sharing it. Thank you for being here.
I haven't been officially diagnosed yet by a rheumatologist, only by my PCP. I'd been having issues with fatigue, joint and muscle aches, facial flushing/telangiectasia on my face. My endo credited it to my Hashimoto's and weight. This past year, I've developed a whole other set of issues, and they've recently expanded. Originally, I saw my gyn for a vibrating (similar to a cell phone going off) feeling in my pelvic area (dx: pelvic floor dysfunction). Once this started, then I would have heartburn, reflux, and abdominal cramps that extended to about mid-thigh and would have a numb/achy feeling to it. GI doc said I had some inflammation and probably IBS. Along with the pelvic and GI issues, I developed palpitations that would keep me up at night. Cardio said it may be a vagal response to the other issues. Anyway, those started to settle down and I semi returned to normal. Then, I caught some sort of respiratory virus and it all went down hill. That's when I started having muscle and joint aches, headaches, and was so tired I couldn't even think. I developed this rash above my eyes that look like little bites and is sometimes itchy, dry eyes, dry mouth, and my tongue feels like I burnt the tip. I have allergies as well, so I thought that was causing some of my issues.
Anyway, my PCP ran a slew of tests because I was miserable. My positives that came back were my WBCs (which have been steadily elevating over the last year or two), ESR, CRP, ANA screen (ANA negative- it was positive a few years ago presumably from the Hashi's), RNP and TPO (Hashi's). My PCP said she suspected MCTD, (which is quite scary if you read everything online!), but wasn't sure about the WBCs. She referred me to a rheumatologist and hematologist. Unfortunately, that was the end of May and the rheumatologist cannot see me until February! I called around my city, and the soonest any can even look at me is mid-October. So I have a couple of questions I was hoping maybe to get help with. Anyone else have these symptoms or am I alone in some of them? Anyone know of a rheumatologist in the KY/IN/OH(Cincy)/TN(Nashville) area that doesn't take months to get into? I'm sorry this is so long, but it does feel good sharing it. Thank you for being here.
Mary Ann
Mary Ann
From what you describe, this sounds like a fairly aggressive presentation of MCTD. What's confusing is the wide variety of symptoms, of course. My hunch, just based on completely unscientific impressions from reading lots of literature and hearing people's stories here, as well as random things my doctor told me, is the respiratory issues.
For the time being, it would probably be prudent to avoid any situation that can increase the possibility of respiratory infection. Flu and pneumonia shots are usually recommended, so I would talk to your PCP about that if you haven't already. I would also be on the lookout for anything that looks like scleroderma-- the combination of those two things needs to be treated more aggressively. If those symptoms get worse? Don't be afraid to call your PCP, advice nurse, and firmly but politely say, "Gee, I'm so sorry to bother you with thus, but based on my symptoms and test results, I'm not sure we are meeting the standard of care for treating autoimmune disorders, and I really need to be seen sooner." (Is that too obnoxious, MT?)
The difficulty in swallowing is really irritating, and it's a real obstruction in lifestyle, at least for me. However, it's usually not dangerous. My palpitations and tachycardia weren't that dangerous, either, though others may have a different experience. What you want to watch out for is pulmonary hypertension. Know the symptoms, seek care aggressively if they symptoms get worse. Do the rest of you guys agree?
Glad you joined us, keep us posted.
I agree the lung and swallowing issues are the most common issues we tend to get. But I have the heart issues also, and the blood stuff which is the aspect you seem to have. It is important to know what to watch for as Cat says but also you need to know that a good rheumy should also be on top of YOUR health problems which might not be the most common manifestations of MCTD. I also think it is important to remember that you can also get many illnesses that have nothing to do with MCTD but can influence the course of MCTD. For instance, a stomach but will really hit you hard if you have reflux or esophageal malfunction. So, getting your flu and pneumonia shots might be a lifesaver for you.
I hate to mention scleraderma because the mortality is not as good as some of the other manifestations, but read up on it to watch and get early treatment as Cat said. And good luck to you!
Mary Ann