I've had doctors tell me that RSD can't spread, that it is "all in your head", and many other falsehoods but last week I heard something that blew me away. It was so off the wall that I just had to chuckle.
My migraine neurologist wanted me to go to a DO for a Osteopathic Manipulation Treatment. His office made an appointment with a doctor who he recommended. This neurologist is the head of the FL DO association so one would think that he has a good knowledge base but he is one of those neurologists who says that RSD can't spread so I should have known that the DO diagnostician that he sent me to might not know much about RSD either.
When I arrived, they asked for my history. When I went in to see the doctor, she began the manipulation. As she was manipulating my head, she was telling me how she took her son to see a doctor in Chicago who was doing this new injection treatment for neuro-inflammation. She wanted to be sure that I knew that RSD fell into the category of neuro-inflammation. I reminded her that I was a nurse and that I had had RSD for 16 years. She went on to tell me about how this treatment involves the injection of D5W (5% Dextrose in water) into the inflamed nerves. Because of the allodynia on the top of my foot, she wanted to inject the scars from my surgery to fuse my right foot with the D5W (sugar water) to "cure" my RSD. It took every ounce of restraint for me not to laugh out loud right there.
At the end of the treatment, she wrote down the web site of this doctor so that I could check it out. I thanked her and quickly exited. When I went to check out, they wanted me to make an appointment for Monday (this was Friday). I told the receptionist "I don't think that I will be coming back, thank you" and ran out of the door.
I can not see how any physician can believe that 5% sugar water can reverse nerve damage when it is injected into a 15 year old surgical scar. It has to be the wildest "cure" that I have heard for this poorly understood disease. I wonder how many people who are desperate for anything that might help them would pay good money for something like this? She told me that there is no procedure code for this injection. Gee, I can't imagine why! So, she was trying to figure out what to charge for it. You couldn't pay me to let her stick a needle into my RSD foot.
You made the right decision-your foot would do one of two things=go totally numb or make RSD worse. For any human being to suggest by making crystals is retarded to THIS wheelchair bound RSD'r and I got that way because though mine is full-body, I would say making the site of injury worse is most likely. Glad I found you, and remain admirable of you and the good you do for those with RSD. My family, seeing me suffer the way I do refuse to help "for the last time" (and other words tacked to it, and don't ask themn though I was accepted and the doc who would do my treatment was and is, willing to write off the 20% not covered. On SSDI, it galls me, but that's the way it is. I did start posting my RSD videos in my timeline-hope that gets the message. Sad-pubicaly watch it, and say "No." But that doc is quacking, not talking. I wouldn't go for it either-the rationale in itself is absurd. Good to hear what you have to say. Thanks for your caring-I am still here as a friend too, and I don't turn on mine; you are a saint for handling it the way you did.
ReplyDeleteGod bless
Jennifer