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.
Which EDS version is associated with Chiari? I cannot find it. God don'tell me it can be any of them.
I think I will be dead before I can collect the Dx of Severe dysatonomia, possibly MSA.Dr. Barboi is starting with the simple POTS tests late Oct. 2014. This is my 11th year in hell. Zero pain control whatsoever.
I am on a huge waiting list to get to the genetisist, Dr. Tinkle, to confirm 3 Rheumys OPINION that Dr. Tinkle will pick, EDS H. That is not a real Dx, so I don't have records with solid Dx's, and likely won't for over a year at this rate.
My brain, has been under soooo much pressure I will drill a hole in my own head soon, but the upper level pain guy won't see me until all these things are proved. My hope is to try Diamox. Nope, not until someone else figures out if I indeed have hydrocephalus. WHO?
A neurologist? Nope. They too wait the outcome from the other 2 docs.
I had to build my own traction gizmo, my own c-spine collar that is a choking hazard.
I have what HAS to be CSF fluid dripping out the top of my nose.
I feel like I should have a 3rd doctor just to begin the process of imaging my brain since it does not look like either 2 of these other specialists, do that part.
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