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I recently found out about Dercum's Syndrome, and believe it could explain many of the undiagnosed symptoms I've had for 25+ years. I'd be interested in talking to other folks who have been diagnosed to learn about good doctors and treatment options...
Ellen
www.bulletpointblog.com
Hello Ellen I have been recently diagnosed. when I came across this disease and read the symptoms I knew I had found out what was causing the pain.The one thing that stood out was the location. I had been suffering from severe pain in my inner thighs, and around the knees. As the pain increased I would feel achy, pulsating, numbness, sharp non stop symptoms. I decided when I had my next flair that I would concentrate on the pain and location to see if I had missed something. So the next flair I tried to stay focused on what I was feeling. i realized the reason I couldn't explain it because it wasn't just nerve, skeletal , and muscle pain it was as if my fat hurt. Bingo! once I realized it, I googled: My fat hurt and I have nodules beneath the skin up, and Dercum's came up . I read the article and I knew deep down that this was it. but I also realized I wasn't obese then I read about type III which explained what I had. so Now I had to explain it to my PCP. I copied the article then typed it, and faxed it his office and asked him to read it before my next visit. I told him to take it seriously because it was important to me. I booked an appointment with a dermatologist. I wanted to see if the nodules causing the pain was lipomas. My PCP read it and said it was possible but there was no treatment or cure. I had the biopsies down. right away I had instant relief after sorness went away from biopsy. The pain was gone and I had another same again. so my PCP diagnosed me. I made up a brochure for myself with information and sources to give to the physicians about Dercum's. I take it to all my doctors offices. The doctors appreciate it. Sorry it was so long but I thought the info could help I will make it shorter next time . Jhewels
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