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Invisible illness how do you cope?
Autoimmune Diseases | Last Active: 4 days ago | Replies (25)Comment receiving replies
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.
Replies to "What Dr did the DNA testing? I have several autoimmune diseases...just had my face ultrasound due..."
After 3 failed ankle surgeries my Dr. referred me Tulane in New Orleans. My son is a Dr of Internal Medicine doing a fellowship there also. I'm also adopted with no medical background. I was diagnosed with EDS which is a genetic connective tissue condition where I don't produce enough collagen so I'm really bendy and my ligaments and tendons are really weak. Between all my ankle surgeries, a total knee replacement and osteoporosis I've shrank 4 inches. Your face concerns me. Could it be swollen lymph nodes or is it a growth? Where on your cheek is it? Just know you aren't alone and Advocate for yourself. If I have questions, the Dr. will stay 10 extra minutes to answer them for me. I go in with a list😂I've fired Drs and changed Drs if I felt I wasn't being listened to. Advocate to your Drs and don't feel bad about being pushy
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Had it done at UConn neuromuscular dept biopsy of glut there too. Very intensive overviews.
Don’t be afraid of Prednisone - it can help so much - actually keep you alive ( as it did with my asthma 40 years ago up to today. ). There may be a price to pay as there is with ANYthing you put into your body. I shrunk only 1/2 ‘ in 40 years. Bones are weaker but no breaks so far, but I get a Prolea shot every 6 months and it helps apparently.