Reflex Sympathetic Dystrophy
Reflex Sympathetic Dystrophy
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Posted by Sam G. Shannon
on February 12, 2000 at 21:03:50:
I was dx with RSD in 1983, since then my life has been a roll-a-coster of active disease followed by remission. Always the disease seems to worsen, never returning to its previous point. My problem is that I was injured while on active duty. I recieve VA disability, but the VA will only look at the original injury to my hand, not the progression of the disease to other regions of my body. In 1992, I began to have CNS symptoms (seizures, loss of consciousness, and muscle tremors). Even on 1200 mg of depakote daily I continue to have symptoms of myoclonic epilepsy. When I am tired my hands jerk and the disease also causes me to fall. Three years later, in 1995, my family physician found blood in my urine. All of the tests, IVP with contrast and cystograms, have been negative. The urologist concluded that the bleeding occurred within the microcirculation, hence the bleeding is likely to be caused by RSD. A year later I had chest pains. I underwent a cardiac cath but it was normal except that the arteries spasmed down and required medications to help with this. Two years later, in 1998, I had severe pain in my left leg. Since I had many of the symptome I had experienced in 1983 (15 years earlier) I was afraid. I consulted with an expert in the area. In May 1998, a thermogram confirmed that my RSD had spread to my left leg. The skin temperature of my right leg was also subnormal. For the pain he presvribed Stadol & Neurotin. I could not function on Stadol. I walked into walls and fell when I bent over. Finally, I was admitted to detox unit in March 1999 and withdrawn from the Stadol.
Still the pain worsened. I am awakeded at night in pain. If I move the wrong way, I will awaken from a deep sleep and scream in pain. I was admitted to a Chronic Pain Unit. The physician prescribed Percocet which worked for a while until the VA removed it from the formulary. She then prescribed Methadone, a drug I was told was the drug of choice for RSD. I also In 1998 I was dx with RSD in my left leg. My symptoms worsened. The swelling in my legs has become so bad that and spread to my right leg. I have swelling so bad that the skin now cracks and bleeds. I now have the symptoms in my right arm. I cannot pick-up anything with my fingers because my fingers are so swollen and the joints hurt.
The last straw was when I was diagnoed with RSD in my eyes. I lost convergence in my eyes so I see double. The opthomolist said that his best treatment was for me to "pray" that the disease got better because my vision is not correctable.
My problem is that the VA still considers my disease to be limited to my left hand. How do you suggest that I go about getting this bull to recognize RSD? Has anyone had any experience with RSD and the VA system?