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I have had problems with muscular pain and joint swelling for over 5 years. During this period I was in and out of my doctor’s office. He could never figure out what was really wrong with me. Then, about one month ago I visited other specialist and he diagnosed me Mixed Connective Tissue Disorder. He told me the basics of this disease, that it is autoimmune disease but can you tell me more about it? I am really scared.

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MCTD is a disorder of autoimmune system and can affect many parts of the body like joints, skin, muscles, kidneys, lungs, heart, nervous system etc. Basically, they are all made of connective tissue. In case of MCTD, and other autoimmune disorders, immune system is over-active. That leads to production of increased amounts of abnormal antibodies that attack patient’s own organs. Manifestations of this disease can vary so it is usually misdiagnosed. It is primarily a women’s disease because it attacks them 8 to 15 times more then men. No one has the answer what causes MCTD. This disease can be mild for many years and suddenly the crisis may occur. The treatments for MCTD are similar with treatments for other autoimmune diseases. To control the various symptoms patients use combination of medications, usually to eliminate the pain and reduce the symptoms.
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I had an RNP blood test an 8 bad I am told. I am on Plaqunil 400mg. I have suffered all these years thinking I was crazy with what this caused my nervous system, severe anxiety and panic attacks. How come none of the doctors I saw ever ordered the RNP to confirm this rare disease. My life could have been different. Now 51 I need to start trying to manage this since there is no cure. I also had a biopsy that confirmed mast cell disease another rare auto immune disease. What were the odds in getting both and the new study from the Swiss show MCTD is 2 in a million have this. The rest like myself did not know for the last 25 years. Maybe RNP and ANA should be part of a screening. I am relieved this was all not in my mind. The foggy spaced out feelings, numbness, among other odd symptoms. This is my daughter's Facebook and my e-mail is _[removed]_ please help this is so rare.
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Hi...if you go to FB and look up Mixed Connective Tissue Disease (yelloww/girl) page...it will tell you all about it. Once you get more informed it will be easier to cope. I am dealing with it also and this is why I posted this page so others such as yourself can get more info and be aware of whats going on.

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