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Accepted in an EDS study at NIH

Guest Julia59

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Guest Julia59

Hi everyone,

I wanted to let you all know I have been accepted into an EDS study at NIH in Baltimore. I have been put on the waiting list and I was told I would hear from them for more details. The Doctor who e-mailed me and who is running the test is below:

Nazli B. McDonnell M.D. Ph.D.

Medical Genetics

National Institutes of Health



They are studying people with EDS and chiari---and I think upper cervical spinal issues. It will probably take a year until i'm actually in the study do to the many people who have signed up.

Dr. Bolognese in NY diagnosed the EDS for me. Dr. Grubb finally confirmed it.

I think Dr. Grubb realized that through following my history with my spinal instability over the last 3 years was enough to convince him. He never really had me demonstrate my flexability either. When I told him what I did in NY to receive the clinical diagnosis---he said you don't have to proove it to me---you already did for them---and he has confidence in their diagnosis.

Although my elbows--and knees don't flex backwards, most of my joints are unstable, some more then others. The most stricking and serious of the instability is the upper cervical spine and cranium area. I have also had recent dislocations of my right shoulder blade. Both hips, and my left shoulder try to dislocate. I can't bear weight on either shoulder. I'm also starting to get a lot of joint pain---although not severe--just achey. I notice it lately in the knees.

I'll be curious as to why this all seems to be happening at once. Although i'm told this is throughout your life--I haven't noticed any problems until after I was diagnosed with all the upper spinal issues. I did notice my jaw was not lined up and pops---and a few other minor things, but now I seem to be falling apart at the seams. On my MRI and CINE MRI reports from NY---I noticed my whole spine has problems ---cervical, thoracic, and lumbar. I was surprised at the lumbar as I didn't realize I had two herniated disks there as well and some other stuff I don't remember.

I would have to look at the report again. I still swear the majority of my pain comes from the herniated disk on c7-T1----but they don't seem concerned with that. Dr. Bolognese is more concerned with the cranial/cervical area. When I had to wear the cervico-thoracic vest, that is when I noticed I had lumbar spine problems. The stabilizing of the other area's of my spine accelerated the lumbar issues. This just further confirms the EDS.

Thanks for letting me ramble---being very careful with body mechanics now.

Julie :0)

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Guest tearose

Julia, I am so happy that you will have the opportunity have the best testing and diagnosis! Please take notes and tell us everything!!! I hope you don't have to wait too long.

best wishes, tearose

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