MEGLATHERY MD: RCCX MODULE MAY EXPLAIN OVERLAPPING SYNDROMES

[AngelM]

I think I better join the FB group!

Please do. I think we might be kindred spirits. About the same age, diagnosed in the same year, but only after decades of troubling symptoms. I, too, am hyper-mobile. I think people used to call me double-jointed—but not in a nice way. Always felt like a freak because I could do things with my body no one else to could do. Can still touch my toes and pull my thumbs back to touch my wrists.

I avoided participating in this group for years. Why, I don’t know. I have learned so much and people on this forum don’t shut you down if you are having a bad day. And so much knowledge in one place. I am constantly amazed at the level of expertise found here.

I am ask a fan of Megalathery. We need more people like her in this world.

 

[Binkie4]

Just thought I'd share that I have a confirmed diagnosis now of Dercum's DIsease. Still trying to work full time, but it's rough. I've had to take short term disability a couple of times. And ended up having to use a wheelchair to work in the office one day last week (I usually work from home and don't need it).

Hi PennylA

Just to say I now have a referral for a diagnosis of Dercums from a lymphologist. Very difficult to get to see one in UK. My primary diagnosis is ME/cfs for 10 years, lipolymphadema for 3 years, EDS h type, mitral valve prolapse 2 years and OI. I was average weight until the lipolymphadema struck when I was 67, since when it has been a struggle. In fact all the conditions have either worsened or developed in the last 4 years, or rather that is when I became aware of them. Has had big impact on my life. Good wishes all.