Thank you Barbara for your reply! I’m thinking about looking into the kind of collar you suggested, just as soon as I have some more pocket cash. That, or I’ll have to hold off and try to get my doctor to write it off as a medical expense and get my insurance to cover it.
Hi Dr. Diana! First off, thank you for your reply, and for everything you’ve done in your search for answers!
I just got back from my first appointment with a back pain/chronic pain doctor. They drew some blood to test for (and hopefully rule out) lupus and some other things. Unfortunately, he’s not knowledgeable about EDS or JHS, but he listened to a LOT of my symptoms and dx’ed me with poly-arthritis as a starting point. I have a follow-up in two weeks to go over blood test results, and I’m hoping maybe he’ll have done a little digging into the symptoms of EDS and it’s co-morbid conditions by that time. I’ll also have to ask about Diamox and possibly a sample just to see if it helps the headaches when I go back – I was trying not to overwhelm him with a ton of new stuff all at once.
I also got a referral to a rheumatologist. It’ll be another month before that appointment, and I’m closer to some answers, but it’s a step, so fingers crossed! (Not that I’m hoping for EDS, just that I’m desperate for a diagnosis and some relief.) If it comes down to it, I’ll drive myself the 600 miles to see the nearest geneticist who’s treated EDS patients already!
Again, thank you for all you’ve done, and for all the information and helpful tips that you’ve made available to the public! I finally feel like I’ve found an explanation for my wide array of symptoms, and that I’m not just “weaker than other people” (for most of my life I thought everyone felt this way!).
Keep on keeping on, ladies! 😉