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...
Hey, all. I was thrilled to find this support forum today, as I was just diagnosed with MCTD last month. Here's my story in a nutshell:
I started feeling severe bilateral pain in my shoulders, wrists and knees, so bad it woke me up at night. I went to my PCP and asked him to test me for RA because my mother has it. Blood work came back negative for ANA and RA but my sediment rate was 79 (supposed to be around 30). He sent me to a rheumy.
The rheumatologist's initial guess was parvovirus B19 based on my symptoms and high sed rate. He had my blood tested and the results came back:
ParvoVirus B19 positive (rheumy was right)
but also the blood tests showed:
ACE 87 (high)
RNP 4.5 (high)
ANA Direct - Positive Abnormal
Aldolase 9.3 (high)
Sed Rate 32 (much improved a month after the first blood test)
I was sent to a neurologist for an EMG, which came back normal. Hooray! One test that I actually passed!
I've been on prednisone for about 2 weeks now, and yesterday he prescribed plaquenil which he instructed me to start taking if/when I feel the need.
The pain has been much improved, I assume because of the prednisone. There are days I have zero energy, there are days I feel great. lots of random short-term earaches, sore muscles at random times, tingling in my toes, aching in muscles and joints, and a lot of light-headedness. I also get these strange unpleasant sensations in the front of my thighs which always seem to worsen later in the evenings.
It has been such a strange ride, all these new unpleasant, painful symptoms. I'm 54 years old, my husband and I are raising our 5 year old granddaughter, and now I have to deal with this bizarre and unpredictable disorder. I'm glad I have found this forum--a place to share war stories and to learn.
I started feeling severe bilateral pain in my shoulders, wrists and knees, so bad it woke me up at night. I went to my PCP and asked him to test me for RA because my mother has it. Blood work came back negative for ANA and RA but my sediment rate was 79 (supposed to be around 30). He sent me to a rheumy.
The rheumatologist's initial guess was parvovirus B19 based on my symptoms and high sed rate. He had my blood tested and the results came back:
ParvoVirus B19 positive (rheumy was right)
but also the blood tests showed:
ACE 87 (high)
RNP 4.5 (high)
ANA Direct - Positive Abnormal
Aldolase 9.3 (high)
Sed Rate 32 (much improved a month after the first blood test)
I was sent to a neurologist for an EMG, which came back normal. Hooray! One test that I actually passed!
I've been on prednisone for about 2 weeks now, and yesterday he prescribed plaquenil which he instructed me to start taking if/when I feel the need.
The pain has been much improved, I assume because of the prednisone. There are days I have zero energy, there are days I feel great. lots of random short-term earaches, sore muscles at random times, tingling in my toes, aching in muscles and joints, and a lot of light-headedness. I also get these strange unpleasant sensations in the front of my thighs which always seem to worsen later in the evenings.
It has been such a strange ride, all these new unpleasant, painful symptoms. I'm 54 years old, my husband and I are raising our 5 year old granddaughter, and now I have to deal with this bizarre and unpredictable disorder. I'm glad I have found this forum--a place to share war stories and to learn.
Mary Ann
-Kate
This forum is great I was diagnosed a year ago and have learned so much here on this site.
Blessings,
Terrilynne