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Dercum’s Disease: Let's create a support group
Chronic Pain | Last Active: 3 days ago | Replies (119)Comment receiving replies
I’ve been doing my own research for years on the cause of my pain and only recently was pointed in the direction of lymphedema, lipedema, and Durcum’s. I do think I have DD. But how to get a diagnosis when it is so rare that many doctors haven’t heard of it. I do live in Minnesota. Are the doctors at Mayo who specialize in this at all??
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Hi DissidentDaughter,
I was diagnosed in less than a year. That is remarkable after hearing so many people went years without a diagnosis. I knew I had Dercum's through my own research but like you none of my doctors had ever heard of it. I got my oncologist to refer me to University of Iowa hospital in Iowa City. I saw a geneticist there who gave me the diagnosis, Dr Hatem El-Shanti. There is also a doctor in Dermatology there who could probsbly do the same. He is a very kind doctor (Dr. Vincent Liu) I suggest you try to get an appointment there. I think I would go to Dr. Liu. The appointment may take awhile to get in but I believe Dr. Liu would be much quicker. I was referred afterwards by my GP to Mayo but they denied my referral saying they couldn't do any more for me than Iowa City. If you are younger than 65 I have a suggestion. Look up CBL-514. You will find a clinical trial for an injectable that is new and has had much success. I was signed up and ready to attend but I am 69 so I got disqualified. If you can get a diagnosis quickly you still have time to get in the trial. I wish you good luck with a diagnosis and hopefully you get into the trial. It's in Ofallen,Mo. You only go there about 8 times and they pay your transpotation. hotels, and meals. Good luck my friend!