I have recently been told by my PCP and Neurologist that, at the age of 35, I will begin spending the rest of my life in a wheelchair. Presently, I can still walk a little, but I am definitely declining and the pain levels are increasing. I have suffered a poorly understood sacroiliac joint injury, with a potential ongoing buildup of scar tissue in the same area. I have never had any type of back surgery even though I also have a 12 year old ruptured L5-S1 disc. My current doctors are no longer searching for treatment options and have told me to learn to accept whatever amount of lower limb paralysis that occurs. An EMG in Sept. showed "interesting" findings, including some nerve damage and testing by an Urologist showed "something similar to a spastic bladder". I am often on high doses of prednisone to control severe rt.leg sciatic nerve flareups, but this does not help some newly developing pain problems around my tailbone. I just need to know, even though my current doctors have actually given up any hope of a recovery and are not searching for treatment options, aside from the steroids, pain killers, and, eventually a wheelchair, isn't it possible that a surgeon might try something, anything, to treat or prevent further paralysis? In my view, what do I have to lose anymore? X-rays show that I don't have any fractures, and only 1 EMG and 1 MRI (with contrast) have been performed in an attemp to find a diagnosis. My doctors have given up hope without even trying to find a concrete diagnosis. Please let me know, is there any hope to attempt some type of treatment, or is a wheelchair, steroids and pain killers my only option? I have already read that this type of injury is generally poorly understood by physicians who are used to treating cervical, thoracic or lumbar problems and that some of my symptoms will even seem rather odd. However, I have read that I at least need to seek a physician who has experience with sacroiliac joint and related injuries. Do you have any ideas or should I actually just resign myself to the eventual, lower limb paralysis? If I should continue to have some hope, does this seem to be something where I need to find another physician ASAP? I don't understand enough about the nerve involvement to know if the paralysis becomes more permanent the longer I wait, or if nerve regeneration is possible whether I find someone tomorrow vs. a month from now. I am very frightened about my condition and would appreciate any guidance that can be offered.
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