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Hey everyone, I’m new here and about 6 months new to both Chiari and EDS. For a long time, I thought I was dealing with Chronic Lyme disease, but it turns it I only fell into a Clinical diagnosis that didn’t respond to Antibiotics. The Antibiotics only made me worse. My story is long and troublesome. In attempts to learn more, I put together a Medical Facebook group, “Chiari Medical (Q & A)”. We actually support both Chiari and EDS equally, but FB won’t allow me to change the name of the group as we are quite large.
Anyhow, I wanted to share this great Symptom Questionnaire we put together with all of you. I will supply both the link to take the test and the results of everyone that took it. I encourage all of you to take it and know that it’s 100% Anonymous. No personal information other than your reply is necessary to participate.
Thank you all,
Gary Engelman, BSN, RN
Chiari Medical (Q & A)
Facebook address: Click Here
It’s certainly a thorough list of things for the survey but I said no to loads of things that I just do know if I have or not…. i have no idea about B12 levels or white cell counts or many other things….you need a “don’t know” option for everything as many of us suspect we have Chiari with EDS but getting it properly investigated is just impossible.
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“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”
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