Unfortunately, there is some definite truth to what your doctor says about the lack of specialized knowledge from a neurologist
having to do with EDS or the hypermobility factor which is consequent to having the problem. I'm a neurologist and do have a couple of patients in my HEADACHE CLINIC since these patients will suffer from headaches
(both primary types such as migraine
or tension as well as mechanical types due to hypermobility issues of the neck because of cervical spine
instability from the ED). EDS is confirmed by genetic testing
. Actually, Kudos to whoever suspected the diagnosis enough from your presentation to send you for confirmation. The problem with now going to a SPECIALIST for this problem is that there isn't anybody aside from GENETICISTS who may be medical clinicians who would see that many cases during their training in any other field EXCEPT as it relates to the CONSEQUENCES OF the malady. So, I got to meet these 2 patients whom I've been following (and learning a lot from) because of headaches that were not easily treatable but their primary doctors or other specialists. Orthopods might have EDS patients due to musculoskeletal issues that may be best handled by them because of ED...but they do not have truly specialized knowledge in the infirmity since it is really considered a RARE GENETIC problem. Here's a link you can look up if you're not familiar with it to get more information. I suggest you look up doctors who are on their list of treating physicians since these folks have expressed an interest in treating this problem and therefore, through sheer experience and having an idea of what works and what doesn't work in their patients can guide you or help you get some relief using creative use of prosthetics or knowing who else they might be able to call in case they're not sure what to do next. Make sense? First of all, you may be interested in signing up with a REGISTRY which is GLOBAL and tracks all those who fit the criteria for EDS....check it out...maybe you don't wish to make your information available but it is a Legit site and has a bona fide mission directed at being able to track and have on hand all folks who fit the registry for future things such as research programs, etc.
Second, here is the official website for the Ehlers-Danlos Society where you can find a lot more information related to HELPLINES, SUPPORT GROUPS, ORGANIZED ACTIVITIES, CONFERENCES, MEETINGS where both patients and doctors get together and have POW WOW sessions to get on the same page with where the research is, what steps a person can take if they are game to get into a protocol, etc. Send me more questions to www.bit.ly/drdariushsaghafi and I'll be happy to answer. I think there is a ton of good information that would literally take me hours to go over with you....but you have the time to learn about this and finally there is a DOCTORS DIRECTORY that lists medical professionals by State who you may contact.