Hi Pete,
I agree the RSDSA is a great organization. I went to the annual conference a few weeks ago, held here in Scottsdale AZ. It was all day,135 attended, the Founder, 3-4 Drs. & Scientist. It was videotaped to be offered thru the RSDSA later. The following day was for the Drs. therapists, etc. I picked up several pamphlets etc. I'm going to write and buy-ask for several to pass out, for instance a couple weeks ago I went in for a blood draw. The first office had just closed, but opened the door my girlfriend asked if they could just take me, as how difficult it was for me to get in. I asked the two nurses if had heard of RSD and named it outright. They said no. I gave them the spelling, but howmuch better to have the brochures with me to give to them. They didn't let us in, so we went to another lab before it closed. I asked for the senior nurse and a bufferfly needle and we discussed RSD. Both nurses had never heard of it. How great it would have been to give them both a brochure. So needless to say, I'm ordering at least 100. and going back. I will have them with me, dentist, all drs. etc.
My next door neighbor is a Medical Dr. till he got C a couple years ago.
He and his wife always ask me how I am. He now teaches medical students a couple days a week. He asked me if I would like to speak to the students about RSD and I said Yes. So I'm going to make an outline, hopefully intelligent, and speak to his fall class.
Last year there was an national educational meeting regarding RSD in Phoenix. I wasn't able to attend.
Education of RSD in the medical schools, laws passed to accept disability and assistance for treatment like HBOT added to the list of accepted treatment for the insurance companies. My Dr. Neurologist is building to new clinics with a HBOT in each of them. I gave him a marketing tool we use in our business to promote the HBOT.
My husband and I have owned our own business for 42 years, so we have a little experience in growth and various ways to make that happen.
This latest bump in the economy has affected our business, so I need to get some people we've hired organized and get out their and get some new coffee jobs. As we all know how expensive this disorder is, we need to replace the jobs we lost over the past few months. I pay my Dr. cash-$250 an hr. and the HBOT will be cash too, plus insurance doesn't cover the new treatment I'm going to start to help with the 'heat' body and hopefully get me sleeping a little better at night. It's hormone replacement therapy by bio-identical hormones thru a compounding pharmacy.
Anyway, my personal opinion is to add RSD to educational program for medical drs. while in school. way way way too many Drs. have never even heard of RSD.
Thanks Pete for the interest in getting the word out. I went undiagnosed for 4 years, misdiagnosed for 1 plus years, then flew across the country to a group of sports injury DRS. and wah=la 1 minute got a RSD diagnosis followed up by nuclear med test, next day started therapy, Doc ordered Tens unit and came back to Arizona and got a good neuro and ortho and got into therapy. Have full body also like yourself, plus trigeminal nerve disorder, and fibromyalgia..
It's no easy, but I am very grateful for the many years of good health and being able to do so much with my husband and daughter. She was 17 when I got this, so packed in a lot while she was growing up, tennis, horseback, water skiing, snow skiing, traveling, aerobics, swimming,and am so thankful for those years of health while she was growing up.
Thanks again for the boost in getting the word out, it surely will help others get diagnosed sooner. They said at the RSDSA 50,000 persons a year are getting RSD, more children and young people than before in US. Your friend, loretta