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MCTD (Mixed Connective Tissue Disease)
Autoimmune Diseases | Last Active: 3 days ago | Replies (220)Comment receiving replies
My difficulty with MCTD is my specialists only look at it from their expertise and not how all issues affects me. I feel I’m fighting on my own.
Replies to "My difficulty with MCTD is my specialists only look at it from their expertise and not..."
@macalsy You should not have fight this disease on your own. You have a right to a good diagnosis and treatment! Do you have a primary health doctor? Ask if they can refer you to a comprehensive medical center or university hospital. You will find much more learned doctors there. And take someone you trust with you. Someone who has seen/knows of your suffering and can take notes and ask questions. When I first got sick and had severe nausea and ended up in the ER, the doctors just sort of patted me on the head and said not to worry. I finally got some help in the ER when I was non-responsive. None of the doctors knew what was wrong so my husband called University of Colorado Hospital in Denver and we went there. So I’m still here!
Will you call your PCP tomorrow and let me know what happens?
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Specialists don't have time to discuss the side effects, only the issues. Unfortunately they are so over whelmed with patients. If you have a good family physician he/she would be a good one to talk to. Do your own research to understand as much as you can works as well. And, of course, joining this group is the best. I have had MCTD for over 43 years so if you want to tell me about your issues, I will try my best to listen and, if possible, help you. We are here for you.