A new diagnosis for me

[mwmaxwell]

Last month I saw a geneticist and although I was 1 point shy of an official hEDS diagnosis he told me he considered me as having EDS without all the skin manifestations. He also said my age was a factor (55) and if I’d been seen at a younger age I would have been officially diagnosed with it. My official diagnosis is Generalized Hypermobility Spectum Disorder. He told me to not get caught up in the name and the GHSD could cause just as many problems as EDS like POTS, MCAS, etc. I would like to thank @JenB for raising awareness about this condition. Now I am following @jeff_w ’s suggestions to be evaluated for possible CCI, etc.

 

[ehc918]

Might I ask how you were diagnosed? I have expressed my concerns about EDS but since my wrists/elbows/knees seem normal, I've not found any help. I have super hyper mobile shoulders, hips, low back. I also had severe (triple "S" curve L35, R55, L38) scoliosis dx in 1988 via X-ray. I know that can sometimes be seen with EDS.

 

[mwmaxwell]

I was seen by a geneticist. I was diagnosed via an exam and medical history. If you go to the Ehlers-Danlos Society’s website there is a form for clinicians and it shows what to look for. As the geneticist told me, Hypermobility Spectrum Disorder can cause as many problems as hEDS.

 

[ehc918]

Thank you!

 

[mwmaxwell]

You’re welcome! I highly recommend Fullerton Genetics of Mission in Asheville, NC. Dr. Chad Haldeman-Englert was fantastic! He was very interested in many of the overlapping symptoms of ME/CFS as well.