Barbara
Thanks. I have a copy of your head/neck mri pictures to take with me.
What I would like is a written version of the Driscoll theory as it stands now and the connection to mast cells etc. The original Driscoll theory videos mention attached documents that aren’t there any more as far as I can see. A copy of the book would be great too but I can’t find one online. I find the videos quite hard to hear clearly and they don’t stick in my befuddled brain…something written I can take to the neuro would be ideal. I have only got the help (well help is pushing it, a diagnosis of sorts is more like it) I have because I know more about EDS than my expert doctors but I find all this too complicated to explain so need papers I can send before the appt.
I know that things are progressing in the US with some acceptance of this now but like many others I have spent the last 14 years trying to get expert (!) doctors to do something for myself and for around 7 years with my now 17 year old daughter Rachel. Our 9 year old is showing some signs too but trying hard not to get her into this stupid loop until we need to. We have mannaged to get Rachel to see a chap in Plymouth who is interested in finding out more and wants to help but Plymouth is hours away so we have to do email consultations and rely on the local Paedatrician who can’t wait for her to be 18 and off his hands….
V. More information about headache trials and UK websites would be great. I hope your new neuro gets somewhere for you. I found the UK brain and spine foundation and a web chat they had about Chiari recently, they had a few questions about the connection to EDS which were not answered well except they mentioned that more work needs doing with this….I suspect Chiari = EDS but the whole world think EDS is so rare that it doesn’t even pop into their heads.
Your Japanese saying is spot on. I feel very sad for people who can’t seem to live without a beer and people who have been well all there lives who want to be bumped off if someone has to look after them when they get old. I have a wonderful life despite all this as I have a best friend for a wife and the most lovely two girls. I count myself extremely lucky as I am also convinced the dodgy genes that give me EDS also give the ability to do many creative things that others can’t. If I didn’t have EDS then I wouldn’t be me.
Thanks for replying, Dr Driscoll’s theory is clearly the way forward for us all, but many of us need help now and can’t wait for peer acceptance and official publication. I just want someone to be convinced enough to let me try Diamox for a few days…
Brian