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MCTD (Mixed Connective Tissue Disease)

Autoimmune Diseases | Last Active: Sep 18 10:07am | Replies (225)

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@abviolinboy

I don't really know how to start this so I am just going to jump right in. I am a 23-year-old Male who was diagnosed with MCTD when I was about the age of 13. To this day I have been on multiple medications, none of which has shown any sign of helping. My symptoms, for the most part, are swelling and joint pain (Rheumatoid Arthritis) and Chrons disease. When I was younger, I had small amounts of pain and abdominal discomfort. As I have grown older, my chrons symptoms started to disappear almost completely. However, now my arthritis symptoms are starting to come at me harder and harder. I am now unable to work a full-time job and, due to my pain, may have to stop working completely. For being so young, this is an extremely hard thing for me to deal with, and I'm not quite sure how to. On top of that, I have done some research and I know that people with this diagnosis, only about 13% develop into terminal cases. I guess with the worsening of symptoms and the more I feel 'Unwell" I'm starting to get scared that my illness may be progressing in a way that I do not want. I would wish my doctor would give me some advice or some words of encouragement but he has very poor bedside manners. He doesn't say much that makes me feel better, other than the fact that he never seems worried about me (although it comes off as a lack of caring in my opinion). I am sorry if this has come out as word vomit as this is the first time I have really said (written) any of this out loud. I guess I am just looking for some good words of advice or encouragement from people who have been in this situation, and I guess some first-hand knowledge if I truly should be worried, or if I am making a mountain out of a molehill. Anything anyone has to say will be helpful. Thank you for your time.

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Replies to "I don't really know how to start this so I am just going to jump right..."

I am truly sorry your provider is lacking in empathy. I understand very well and a few yrs back moved to find abetter team of provider. I saw a counselor for a short while where shehelped me process loss of my abilities and aided with breathing exercises .

I have RA, psoriatic arthritis, degenerative disc, new latent tb, sjogrens, etc. So managing can be most difficult.

Please try not to focus on end stsges, I know it's hard. Do you have caring family and friends? From moving I don't know hardly anyone. Our lease is about up so will move again next month. I am trying to looki at it positive in hopes we get to make friends in a better location. My RA is going to get bad since Dr. Took methotrexate away with new meds for tb prevention. My hope is we can find a way for the pain to disappear and lifes journey is more positive. I am here to talk and glad you reached out. julie

It can be a scary diagnosis but it is worth the effort to focus on staying healthy. I have co pletely changed my diet and that has helped a lot. I eat organic and have gone gluten free. It has helped with the pain and definitely improved my energy levels. Reducing stress is very important as well. Everyday is a new day and on the low energy days I focus on spoiling myself and being lazy. I also have a family doctor who is very supportive. I did see a naturopathic doctor and learned a lot on reducing inflammation in the body. I did not purchase everything they suggested but I learned a lot. Dr Perlmutter has many articles on line and has written “The Grain Brain” which helped me on my gluten free quest to better health. Keep searching and I hop you find positive support and answers. It’s worth it.