Heartbroken Posted August 10, 2021 Report Share Posted August 10, 2021 Anyone here has EDS? have you been to Dr. Aubrey Milunsky in Cambridge , MA? I will see him in December 2021. I have almost all EDS symptoms. Quote Link to comment Share on other sites More sharing options...
cmep37 Posted August 10, 2021 Report Share Posted August 10, 2021 I have hEDS - I live in the UK though so have no experience of the consultant you mention. When I was diagnosed I was 38 and had been told for years my symptoms were due to fibromyalgia. I had never heard of hEDS (there is no real family history - only a great-grandmother who had a shoulder which dislocated daily) and only got diagnosed because the cardiologist who diagnosed me with POTS took one look at my hypermobile wrists and fingers and asked me who I saw for hEDS. I score 8/9 on the Beighton test (my hamstrings have shortened too much to get my hands flat on the floor although I could do this easily in my teens and early twenties). I don't tend to have many full dislocations but I used to have a lot of what I now know are subluxations - I have considerably reduced the number of joints that sublux through a regular programme of physio exercises. Any questions about symptoms/diagnosis feel free to ask. Quote Link to comment Share on other sites More sharing options...
Sushi Posted August 10, 2021 Report Share Posted August 10, 2021 I also have hypermobile EDS but have not gone to any specialists (diagnosed by my Dysautonomia doctor), because I haven't heard that there are any effective treatments other than physical therapy and otherwise strengthening muscles. I have had prolotherapy on my knees but having it done on all my lax joints is impractical and it has to be repeated every so often. I am trying the Cusack protocol though it is too early to assess how effective it is. Good luck finding help. Quote Link to comment Share on other sites More sharing options...
Heartbroken Posted August 11, 2021 Author Report Share Posted August 11, 2021 cmep37 & Sushi Thanks for your replies. Gentle hugs for both of you. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted August 17, 2021 Report Share Posted August 17, 2021 I have two daughters (23 and 25) that have hEDS. Both were diagnosed by Dr. Jaradeh at Stanford's Autonomic Clinic. They have dysautonomia and POTS, as well as a few other things. Haven't heard of the specialist you've mentioned, but I hope your appt goes well! Quote Link to comment Share on other sites More sharing options...
p8d Posted August 17, 2021 Report Share Posted August 17, 2021 I have hEDS too. I have done PT in the past. Please let us know how it goes. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 18, 2021 Report Share Posted August 18, 2021 EDS and POTS can be connected as many of you are already aware. https://www.dinet.org/info/eds/ Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 18, 2021 Report Share Posted August 18, 2021 Pretty sure i do not have EDS ( I can't flex a single ligament ) but wonder if a cervical instability comes into play. I have been doing PT time has helped but the therapist is concerned. Quote Link to comment Share on other sites More sharing options...
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