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Paraplegic with no diagnosis and multiple test
I am a 100% disabled veteran and I began having numbness and weakness in both legs. In just 4 short months my condition progressed to complete paraplegia. I have seen several neurologist and neurosurgeons, both within the VA and commercial providers. I have undergone multiple X-rays, MRIs, MRAs, 5 spinal taps, and no definitive diagnosis. I have requested to be referred to the Mayo Clinic and have been denied 4 times by VISN. I have filed complaints with my senators office, the Patient Advocate at the Raymond G Murphy Medical center and filed a complaint with the VAOIG. It does not seem like anyone is listening to my case.
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Sorry to hear about your issues. Follow up on getting DNA checked for the markers for CMT (Charcot Marie Tooth) disease. Then MRI and if that doesn't provide any answers, talk to a orthopedic surgeon or spine surgeon. Four months is a short time to lose it all. The point is to exhaust all nonsurgical options first. Thank you for your service to this country. I didn't have the experience to do it the right way and pain was so motivating that I was ready to pull the trigger on anything. Mayo turned me down since i had the tests run at other doctors and they couldn't do anything else. Good luck.
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3 Reactions@burch55
Thank you for your service!
Have you seen a neurosurgeon or orthopedic spine specialist to check for spinal cord compression in your cervical spine or lumbar spine? Did you fall after having numbness in your legs and further hurt your neck or back? Having cauda equine compression in your lumbar spine is an emergency and you would need to be treated urgently to prevent paralysis.
Did something happen right before you started to get numbness and paralysis?
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2 Reactions@burch55
P.S. My experience with neurologists hasn’t been the best. They test you to death but do not treat or refer to other specialists to treat underlying causes.
Have you been to a rheumatologist to check for autoimmune diseases affecting central/peripheral nervous systems? Did your neurologist do EMG/nerve conduction studies?