MCTD

Posted by Cindi A @cindia1, Feb 5, 2013

Would someone else please join this discussion and let me know how you cope with Multiple Connective Tissue Disease? How can you explain it to your family and friends when they just do not understand? How can I explain it to my doctors? Myself?

I am always tired. Extremely tired. Weak. Do not feel well…..ever. Then at various times, I have problems or flares with several different issues. I always seem to struggle with the neuropathy in my feet and or the raynauds or just swelling and pain. The GI problems are endless. Though they have talked about someday I may have to have a feeding tube, I have always fought that. But with this dismotility and Barretts, some days I actually think just do it and get it over with. I am tired of the pain and wondering what to eat, what I CAN eat.

My skin hurts. My joints hurt. And I feel like I am losing my mind some days. I hate when I feel all whiny and negative. That is not me but darn it all, I hate these illnesses.

The doctors all say to join a support group. Where and which one? Lupus? Scleroderma? Raynauds? Sjogrens? I am at a loss so turned to this site.

Any advice would be helpful. Or just knowing there is someone else out there going through the same thing and understands!

Hello. I am not officially diagnosed, but it has been suggested I may have MCTD with beginnings of Scleroderma (19 yo female). What are some questions you wish you would have asked when doctors were running diagnostic tests? Do you have specific antibodies for which you recommend to be tested? Specific data/ notes you wish you would have recorded about your symptoms? Scans that provided crucial informational?
Thanks in advance!

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@1corinthians926

Hello. I am not officially diagnosed, but it has been suggested I may have MCTD with beginnings of Scleroderma (19 yo female). What are some questions you wish you would have asked when doctors were running diagnostic tests? Do you have specific antibodies for which you recommend to be tested? Specific data/ notes you wish you would have recorded about your symptoms? Scans that provided crucial informational?
Thanks in advance!

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Welcome to Mayo Connect, @1corinthians926.

You are asking some great questions. Here is some information from Mayo's website that you might find informative, https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/symptoms-causes/syc-20375147. I'd also like to invite @wofmaria and @guthealth to this discussion.

Also, here is a link to a video presentation about Scleroderma. While it was shown in 2017, you might find it helpful,
https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

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I am going through it also.

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@jennifer2010

I am going through it also.

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Hi @jennifer2010, you'll notice that I removed your email address from the public forum. We recommend that you use the secure, private message function to share personal contact information to avoid getting unwanted spam. Keep in mind that by sharing here, you will help many.

It really helps to hear from others who have first-hand experience with MCTD. I really like the questions that @1corinthians926 asked. perhaps you can help answer some of them.
– What are some questions you wish you would have asked when doctors were running diagnostic tests?
– Do you have specific antibodies for which you recommend to be tested?
– Specific data/ notes you wish you would have recorded about your symptoms? Scans that provided crucial informational?

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