I have Elhers Danlos Syndrom (syndrome) and Chiari 1. I have been told they go hand and hand is this true? I have tried to go back to work but it seems I miss more work then go to work lately. I get sick really easy. Somedays it s difficult for me to go from my bedroom to the kitchen. Somedays it is all I can do is to get to work. I get migrains were I loose my speach, my vision and they last up to 4 to 5 days. when they happen I end up having to go and get shot from my doctor to break the cycle. no meds seem to help and believe me I have tried most of them. Is this just something I am just going to have to deal with.
I too have both....I am approaching my 1 yr anniversary of my PFD.....how long since u had urs?
Have u been to a rheumatoid dr that specializes in EDS?
I had the same issues that u mention but it was all prior to my surgery....and it went on for yrs like that and got progressively worse.I have not gone back to work since my surgery as I was told I still am not able to drive, and need 2 more surgeries for stinosis and tethered cord.
Have u been checked for other issues like a syrinx or TC?
We r happy to have u join our little family here, so sorry for the reason u had to seek us out.
Below is a link to the ehlers danlos group here on MedHelp.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.