Reply To: New Member Intro
Thanks for your reply and information, Ron. I am there with you as far as we are our own best advocates. No doubt.
I have been doing much research on this disease. I stumbled across Onno Faber through a Ted talk. He, too, is suffering from a rare autoimmune disease. His website is http://www.rdmd.com. It is for rare diseases, CIDP, being one of them. I now have all my Doctor records, tests, notes, etc. in one place. I am also kept informed as to clinical trials. One of his goals is to run all the data points for a person through a computer program to determin DNA in hopes to find a match to a drug already out there that will help the condition. I see a day in the future where this will be standard protocol.
Ron, I read a success story from a person who has received much relief via PE. Have you looked into that?
I am doing PT twice a day, riding a stationary bike as much as I can. Some days it is easier to do than others. I also bought a Vissiq neuromuscular trainer which has made it much easier to take walks. Ordinary walkers don’t let you stand up straight! Vizziq is brand new to the market. It’s developer is a lady who has MS. She is a physical therapist. Her name is Katherine Haig. I believe she has a couple videos on YouTube. You can google Vizziq if you are interested.