Story about Transverse myelitis .

My T.M. journey

Feb 22, 2016

By: Randy


In 2009 I started having numbness in my feet and a burning sensation in my inner thigh. Went to see a neurosurgeon who told me I needed surgery for a herniated disc to decompress a nerve that was causing these issues. I have the surgery in august 2009,  10 months later I was in Washington DC DJing, I walked off the stage and started to walk to my car at which I just started limping for no reason at all. Once I got to California I went to my neurosurgeon who performed the surgery,  acted like he didn't care. He sent me to a neurologist at cedars siani and after a series of test, I was diagnosed with Transverse Myelitis, had never heard of it.  He also told me I had a surgery that was not needed because their was a lesion all along. Had I been given a IV steroids instead of surgery I would've be in the the top 33% of the recovery. I'm very functional still, have no nerve pain just numbness and tingling, leg fatigue from muscle weakness and the original symptoms that caused the surgery.  I work out 3 days a week to keep my legs strong,  I do a 3 mile sand walk once a week as well. I've traveled around the country to meet others with the disease, I've participated in a Ampyra clinical trial at John Hopkins medical center in Baltimore Maryland which is one of the leading hospitals on T.M. so I'm an advocate as well. Been a hard life changing journey,  still hoping for a cure.

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