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Mixed connective tissue disease - Looking for support
Autoimmune Diseases | Last Active: Sep 26, 2018 | Replies (17)Comment receiving replies
Hi My new MCTD friends. Today I went to doctor I am in pretty bad condition., doctor read thru my notes in my medical notes book, and I have severe symptoms.,I’m on some strong medication (clarihexal 500 mg and exinef 90mg and prednisone 10mg and interflora 250mg as probiotic + nasal spray flomist) to keep me going till I see the rheumatologist 14 November. It’s long time to wait but my condition is rare here so we don’t have a lot of doctors that works with this condition of mine. I feel very down for some reason and at one stage felt like I would cry..but I swallowed hard and put the tears away. I mean I have to be strong. I still feel like I’m not dealing with what is reality because I don’t know why or how I got to this.., I mean no one in my family has anything like this and they never even heard about it. How do I deal with it because whenever I want to try all I want to do is cry. How do I put myself together again and live?! I’m so scared of dying while my kids are so small.
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@liyana You are looking at a condition that will probably last through your lifetime. This is not to say that it should destroy your life. First there is a lot of confusion about exactly what MCTD is, and I know only enough about that to stay away. But I should note that almost every autoimmune disease gets confused with it. So keep making your notes in your book. I am including with this note my own set of notes, including my medical timeline. You can do the same thing. I don't really care if you cry or not, that is your choice. But do not let it define you or control you, or destroy you. And keep in touch. We all think we can define what you have, but because there are thousands of variations on both yours and ours (Mine is AL-Gelsolin, We are pretty sure) we can finally only do some educated guesswork. And good to meet you. Stop by some day! Old Karl
Amyloid and Old Karl V 24 (Amyloid-and-Old-Karl-V-24-1.pdf)