- This topic has 1 reply, 1 voice, and was last updated 9 years, 10 months ago by .
- You must be logged in to reply to this topic.
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.
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
“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.”
-- Chris Gross