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Originally Posted by SBOWLING
Hello and Welcome to Neuro Talk!!
I have been to see Dr. S many times. The 4 hour 10 day ketamine didn't work for me. Have you tried that treatment yet? For now I have passed on the coma. My PM, physcologist and family doctor don't think it's worth the risk. Dr. S told me there is a 50/50 chance it will work and he couldn't say how long remission would last or how often I would have to have boosters. Everyone responds to treatments differently. It also depends how advanced your RSD/CRPS is?
Did you talk to Dr. S about the stimulator? He didn't think mine was a good idea and would have told me not to do it had I asked him. I had mine for 3 years and just had it removed last November. My RSD is full body and IMO the stimulator isn't designed for full body. The programmers where never able to get it programmed to really help. It is very sensative to posture and would turn up the stimulation and shock me when I turned my head. When I sat down it would turn off the stimulation. Even with my stimulator I was still on medication.
There is no cure for RSD/CRPS it can be managed. What hasn't worked for me may work for you. It takes time and open communication with your doctors to develope what works for you. I know how you feel about wanting a light at the end of the tunnel. Your light may be learning to accept the changes RSD has caused in your life. I wanted to get back to only my daily vitamin. However, I accepted I need my medications to maintain a quality of life. It's like a diabetics needs their meds, so do those of us who have RSD/CRPS.
I hope you are doing some type of exercise. I water walk and take a arthritis plus class at the Y two sometimes 3 days a week. You are weightless in the water so the pain isn't as bad.
I know at times it all seems so overwhelming and complicated. The nice thing is this site is full of people with helpful information. I hope you find relief soon!!
Sherrie
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Thanks for the quick response and oh so honest feedback/advice.
I would enjoy providing you/everyone with more specifics about my situation, but it sounds like I could be missing a big piece of info that I need hep with first.
You and others seem to be indicating organ involvement as part of your CRPS?!?!?!? Can you educate me about this and can others tell me if any of this sounds familiar/makes sense?
For me all of this began over 5 years ago when I realized I had a constant pain behind one knee which about three weeks later was bilateral and so painful that I could barely walk.
That pain has only gotten worse, but it took nearly 5 years, multiple major clinics/hospitals in the US, more docs and tests then I can remember to finally obtain a diagnosis of CRPS as being the source of this problem.
What was discovered within 5 weeks of the onset of pain was that I had Triglycerides >3,000, I had hypertension (BP ~160/120), and I had a fatty liver.
The diagnosis of hypertriglycedemia was immediate. The treatment approaches were absolute and all of the doctors initially involved (and 90%+ since) were very certain that this was a genetic problem I was born with.
I however just didn't see how this was possible and given the potential medical concerns all of my immediate and much of my extended family were tested and not one had this problem, there is no history of premature deaths from heart attacks or strokes and to date no treatment has been able to bring them under 500.
This of course is only one of the other medical problems I have in addition to CRPS and in hindsight I have some serious questions about a number of strange episodic health issues I had throughout the years, but for now I appreciate any input other CRPS victims can provide on known impact to organs/systems and sources of info on this.
Thanks again