As most of you guys know, being a patient can sometimes feel like a full time job, especially when you have a relatively rare diagnosis like EDS. You have to do hours and hours of research, just to find one little tidbit that clicks in your brain, causing a "eureka" moment. Then there's more research to see if the findings have been duplicated independently, then printing the relevant information, making a doctors appointment, and actually handing over the 3 sheets you printed out of the 3000 you read. At this point, when you hand over the information you spent so many hours trying to find, most doctors just glance at the sheets, say "Hmmm" then go about the appointment as though you weren't there.
That's been my experience at least.
Until, last week, when I was looking through an EDS website, and I found a link to prolotherapy, as performed by a company in the U.S.. This place is the only one I've found that does "whole body" prolotherapy, treating many areas at once, and letting people know that it may take up to 18 months of treatments before you receive the full effects, and there's always a possibility that you may need "tune-ups" every so often. This company also gives an 85% success rate for treating EDS patients, which is much better than the 50% most places give you.
There happened to be a list of practitioners trained by this company, and one of them lives in my city. So I e-mailed him. And he e-mailed me back. With questions about me, my life, and my various injuries.
I am now cautiously optimistic... Once he responds, hopefully with good news, I can go about getting the necessary paperwork in order. See, I have to go to the walk-in clinic, and request a referral, and wait for an appointment, and it's probably going to take months and months, just like everything else medical in this province. But maybe, if I'm "interesting" enough, he'll take pity, and fast track me... (probably just wishful thinking on my part)
Most uplifting statement I've yet read relating to Ehlers-Danlos Syndrome: "By strengthening structural weaknesses in the body, as treatments like Prolotherapy, the problems associated with Ehlers-Danlos Syndrome may be alleviated permanently." Wouldn't that be grand? I'm off to go daydream about one day riding a bike again...
Google sucks now
3 weeks ago
3 comments:
Good luck! Take each accomplishment as it comes, and celebrate it! Please don't count on it alleviating all EDS problems. I hope it does, but beware of anyone who says they can relieve you of it all, as there is no EDS cure or anything that alleviates all EDS symptoms. Good luck on getting in with this physician soon and I hope the prolotherapy helps! :-)
Hi Lady!
I think I should have grabbed more of that quote... It is specific to the EDS problems directly related to the joints. I obviously don't expect my tummy troubles to stop because they stuck a needle in my shoulder... But less joint pain would be a huge step towards feeling more like a person, and less like a zombie.
So the prolotherapy, combined with a beta blocker of some kind (for the blood pressure, heart rate, and digestion issues), and I should almost feel "normal" if there is such a thing.
I've done prolotherapy on many of my joints now and it has helped me sooooo much! I'm in austin, texas but I've done it in NY as well. I've been reading about it and researching it for the last ten years. I've been doing it for the last 2 1/2 years because I have EDS but I also had some serious impact injuries and surgeries. the results have been great. You can go to getprolo.com to find a doctor any where in the country. Here is an article from a doctor that I follow. http://www.caringmedical.com/conditions/Ehlers-Danlos_Syndrome.htm
good luck!!! take care! debbie
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