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MCTD (Mixed Connective Tissue Disease)
Autoimmune Diseases | Last Active: 5 days ago | Replies (223)Comment receiving replies
I hope this helps. I am a 43 year survivor of MCTD so I have a lot of issues. I have learned over the years that I am still me, it is my body that is sick. I can still do anything I want but either to a lesser degree or knowing that I will have to endure the consequences. Everything I do is a decision of importance to me. Is it worth it? Can I do it differently so it doesn't effect me as much? Can I enlist help? I don't make plans until I get up and see how I feel. (Retired so I can do this) But most of all I learned that this disease does not own me and I will not let it run my life. With changes to my behavior and activities I am now more in charge. Not to say that some days it fights back hard and I have to deal. But I realize that this will happen and like everything else, it too shall pass. If you have anything you would like to discuss just post it and I will try to get back to you. Best of luck.
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I appreciate your post!
I was just diagnosed correctly and started Plaquanil & Breztri 3 months ago. Wow! So many things have fallen into place...so many symptoms that were attributed to allergies and asthma have disappeared. We tracked my first symptom ( mouth lesions and butterfly face) to when I was 9 years old. I'm now 62.
I consider myself lucky to only have heart & lung issues that are responding to treatment. No kidney stuff. I've also had to learn to not let my medical issues ruin my life, and they haven't. I've had a very full active, athletic life.
Little did I know that a heart rate of 200 under exertion and skipping every third or fourth heartbeat was as dangerous as it was. It was "just how it goes and it's always been that way" My heart rate was never that bad at a doctor's visit because I was sitting down after waiting, and until I got a smartwatch, I always assumed I was counting wrong. Sometimes a nurse would ask if I was nervous being at the doctor's and wrote it off as white coat syndrome.
After a bout of "asthma" that didn't respond to albuterol or a nebulizer, I saw a pulmonologist. He held my wrist to check my heart rate and literally jumped out of the chair. I was at a cardiologist within 24 hours, got a full work-up, and was diagnosed with MCTD within 10 days. Neither of them could understand why I wasn't at least misdiagnosed with lupus with all the classic symptoms I've had. Water under the bridge.
So now I'm eating food without painful mouth & tongue lesions for the first time since I was 9 years old. I'm actually tasting food instead of trying to just get it into my gullet without it touching my mouth. I'm learning to not fear perfume, flower aromas and strong scents for fear of an asthma attack. It's a whole new world.