How to be a guinea pig?
Posted: Thu Oct 10, 2019 3:21 pm
I'm at a point where I've tried all the common medications plus a handful more, and every physical treatment for RLS with a shred of evidence behind it (along with plenty more that had none), and I still have very poor quality of life. I can at least get to sleep pretty consistently these days thanks to my current treatment, but the quality is still trash and I'm never not tired. After years of struggling with this, I've only gotten worse with age, and expect that trend will likely continue.
So...I want to be a guinea pig for some novel treatment like spinal cord stimulation, transcranial magnetic stimulation, deep brain stimulation, etc. Unfortunately the current trials I can find won't work (the SCS study wants people who already have the implant for chronic pain, can't find anything on TMS, and the DBS study is still only testing patients with comorbid Parkinson's). I understand why doctors might be hesitant to throw me to the wolves in the name of research, especially for things this invasive...but I'd much rather at least be trying something...and even if it isn't successful, at least I can contribute something useful to the current research for all the people here suffering just like I am. I can't just sit on my hands and wait 5 or 10 more years for them to get all their ducks in a row, and I'd gladly burn up my savings for just a chance to go back to work and live a semi normal life again.
That being said, is there any feasible way I can offer myself up as a guinea pig for these or any other relatively novel treatments? Do we know of any doctors or companies looking for weirdos like me willing to do this?
Thank you
So...I want to be a guinea pig for some novel treatment like spinal cord stimulation, transcranial magnetic stimulation, deep brain stimulation, etc. Unfortunately the current trials I can find won't work (the SCS study wants people who already have the implant for chronic pain, can't find anything on TMS, and the DBS study is still only testing patients with comorbid Parkinson's). I understand why doctors might be hesitant to throw me to the wolves in the name of research, especially for things this invasive...but I'd much rather at least be trying something...and even if it isn't successful, at least I can contribute something useful to the current research for all the people here suffering just like I am. I can't just sit on my hands and wait 5 or 10 more years for them to get all their ducks in a row, and I'd gladly burn up my savings for just a chance to go back to work and live a semi normal life again.
That being said, is there any feasible way I can offer myself up as a guinea pig for these or any other relatively novel treatments? Do we know of any doctors or companies looking for weirdos like me willing to do this?
Thank you