June 3, 2017 at 11:41 am #1119tarchParticipant
So glad I found this site. Finally diagnosedat age 56 with EDSh. My life now makes sense! I’ve been reading everything I can get my hands on, hoping to feel better. I believe my adult children and grad daughter are also affected. I had to quit my nursing career last year as I became unable to stationary stand without excruciating pain (spine issues) and dizziness which I attributed to pain… I now know its pain AND POTS!! I have a 30-50 bpm difference supine to stand! Life long IBS and major joint pain and degeneration. So relieved to finally be believed!!
TJune 5, 2017 at 11:28 am #6174gentle_hugsParticipant
Hi, I am new too! I am so glad you found the site. I started taking Diamox a year ago after a lifetime of POTS & neck pain & it just changed my life. I take Low-dose Naltrexone for pain & Xyrem for Narcolepsy, which I suspect many people with EDS have.
What are you doing for treatment?June 11, 2017 at 9:26 pm #6176Dr. DianaKeymaster
Hello Tarch and Gentle hugs and welcome! Tarch, I started Prettyill because I wanted to reach out to others who were suffering to let them know the condition was REAL! I’m so sorry you are hurting,
but glad you found us! Gentle hugs, I’m so, so happy that Diamox is helping you. When I first released a propensity for high intracranial pressure in this patient population (in The Driscoll Theory), most doctors thought it sounded nuts! We’ve come a long way! 🙂June 15, 2017 at 1:53 pm #6177ElleParticipant
Hi there. I’m new too. Just today I have finally got confirmation of a diagnosis of dysautonomia with POTS. The neurologist has now referred me to see a specialist in Ehlers-Danlos Syndrome.
I’m in Maryland and I’m wondering if anyone know of a specialist in the Maryland, Virginia, D.C. area that doesn’t have a rediculous wait time to get in to see them?
Also, I just wanted to say to Dr. Driscoll, that your videos have been a godsend. I am also ordering your books to get even more information.
Thanks for any and all information anyone might have for me.June 15, 2017 at 3:16 pm #6178Dr. DianaKeymaster
Thank you for your kind comment, Elle! 🙂June 15, 2017 at 4:15 pm #6180ElleParticipant
It was heartfelt. I’m wondering though if you might know of where I can go to see an Ehlers-Danlos specialist. Dr. Claire Francomano has a 2 year waiting list.
Thanks again, Dr. Driscoll.July 10, 2017 at 2:04 pm #6188
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