I don't have the energy to rewrite what is going on in my head, so here is the text of an email I just sent off to two friends very familiar with my "issues":
Sometimes, when I get desperate, my luck changes...
Monday’s treatment was horrible. I started crying before they even started the i.v. – it just felt so futile. All I could think of was how this was my last chance for pain relief. I felt very bad because when I came out of it, I learned that the nurses were really upset by me being upset. But I couldn’t help it.
Okay, now... follow this story closely!
Last week sometime, out of desperation, I emailed Dr. Robert Schwartzman, the chairman of the Neurology Dept at Drexel University, and probably the most knowledgeable person on the planet about CRPS. I wrote him years ago and really didn’t expect an answer. I wanted advice on "how to maximize the benefits of my subanesthetic ketamine infusions."
When I got home Monday, there was an email waiting from him. It was very TO THE POINT:
Dear XXXXXX,
You have not had enough ketamine. You need ten consecutive treatments of two hundred milligrams per day with midazolam and clonidine. If this is ineffective, you need five days in the hospital with much larger subanesthetic doses of 40 milligrams per hour for five days. You would also need midazolam and clonidine with this dose.
This usually shows marked improvement. We will start some new work on stem cells and there are other treatments in the pipeline. If you can get up here and I will be happy to see you.
Best regards,
RJS
Just when I had no hope...
But I am getting ZERO support for doing anything more. Fred actually said, “How do you know he’s not just another quack?” I have talked about Schwartzman for YEARS! My go-to-guy actually had the nerve to write that I had already given it “the old college try.” I wanted to slap him.
I knew that Schwartzman has a huge waiting list, and yep, it would take two years just to see him.
Then into my head popped the “MCE” [Medical Centers of Excellence] program that is run by go-to-guy’s MDVIP organization – it is a system of referrals with top notch medical centers... It occurred to me that most cases of CRPS arise from orthopedic problems, injuries, and surgeries. One of the referral hospitals that MDVIP uses is the Hospital for Special Surgery in NYC – probably the number 1 orthopedic hospital in the country. So I went to their web site (it was 4 am...) and FOUND THAT THEIR ANESTHESIA/PAIN DEPT IS DOING INPATIENT KETAMINE TREATMENTS!
I also found something on their website that sounds exactly like what is going on with my shoulders:
(CRMO): Chronic recurrent multifocal osteomyelitis: “Chronic: because it does not go away for a long time. Recurrent: because it comes back. It cycles between active and dormant, symptoms and no symptoms, exacerbation and remission. Multifocal: because it can erupt in different sites, primarily bones. Each outbreak can be in a different part of the body. Osteomyelitis: because it is very similar to that disease but appears to be without any infection.” Wikipedia
DOESN’T THAT SOUND LIKE ME?????? That would totally explain why nothing grows in the lab!!!!!!
I need all my mental reserves right now – Fred is fed up. Dr. S (my go-to-guy) is fed up. But they can just get over it. I wrote Dr. S that we could start the process of getting me to the HSS in NYC when I see him in June. I want it done right this time. Last time, I was all set to go to Hopkins and ended up at the Medical College of Georgia with a man who did a consult in under 10 minutes (including review of the chart and x-rays).
Whew. Please don’t you two get fed up with me, either.
I so need to get some sleep.
Am I going crazy? Does the stuff I wrote seem reasonable to you? Does continuing the ketamine even make sense?
love, love, love
XXXXXX
"Love is patient, love is kind. It does not envy, it does not boast, it is not proud."
(1 Cor. 13:4)
