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Invisible illness how do you cope?
Autoimmune Diseases | Last Active: 4 days ago | Replies (25)Comment receiving replies
It is all unfair and a nightmare! I have spent half my life trying to understand the slow dissolving of my muscles m, tendons and ligaments - bones and joints as well. And seeing Drs and doing tests. For NO cure and pain just worse for multiple issues. Now discovering DNA evidence that would explain some ( adult onset MDystophy - am 78 now with RA, and steroid dependence among other). No cure but important for relatives- who knew??!! And the ‘invisible! Drs always say I LOOK so good! Great! I FEEL terrible. Now that I can barely walk they take me more seriously…. Keep on! Find the distractions and gifts in there!
Replies to "It is all unfair and a nightmare! I have spent half my life trying to understand..."
I'm 61 and adopted. I have no medical background on either birth parents. After 3 failed ankle fusions my ortho ordered genetic testing at Tulane. I was diagnosed with EDS which is a connective tissue disorder. I don't produce enough collagen and my ligaments and tendons are really weak. Connective tissue affects digestion, swallowing, eye sight, etc. There is no treatment. My Rheumatologist sent a lot of bloodwork to Mayo and I was diagnosed with RA, POTS, Sjorgens Syndrome and Fibromyalgia. I was also diagnosed with St4 Lymphoma 5 yrs ago. Thankfully I have been in remission for 3 yrs now but the chemo and immunotherapy wrecked what little immune system I had. My 31 daughter is showing very similar symptoms and she sees my Dr. this week. I hate when people say how wonderful I look when I'm struggling to just go to the grocery store😂I look for the good and make sure to keep laughter in my life and my 5 grandkids are the best medicine!
I wish you well❤️
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What Dr did the DNA testing? I have several autoimmune diseases...just had my face ultrasound due to lump in my cheek. Radiologist called it concerning needs additional clinical response? What ever that is? Face swollen too dr thought from predisone which I avoid like the plague unless nothing else works. Watched my Mom shrank 6 inches never diagnosed that I know of.