Finally got diagnosed today after years of looking for answers- Dercum’s Disease and Madlung’s Disease

There are no groups for either of these rare diseases here or on Facebook. I did a search in this group and got no results searching either term.

I have suspected that I had Dercum’s, but I’d never heard of Madlung’s. I’m a nurse of more than 30 years, and have been researching my symptoms for a long time.

I’ve seen many doctors who didn’t have a clue, and who didn’t give a damn. I finally paid $500. for a one hr consultation for a world renowned expert on Dercum’s who was traveling to my area. It is not known for sure how many people have either of these diseases. It’s only known that less than 200,000 people in the US have either of them.

Is there anyone else here who does?