I had what started out to be nocturnal leg cramps that plagued me for years. The cramps became uncontrolled about 3 years ago, to the point my feet would turn backwards and I was unable to stand. I have had 3 EMG's, MRI's of the head and spine, muscle biopsy and spent a week at Mayo in Minn that cost ME $9000.00. I still have no answers after seeing neurologist,neurosurgeons and Mayo. I am on klonopin, cymbalta,tegretol and xanax as needed. The cramps and fasiculations are no longer contained to my legs,they have moved upward to my chest wall and sides. I have also lost bowel control in the last year. I guess I should tell you I was 48 when this started. I consider myself young to be in diapers for fear of soiling myself in public (which has happened more than once even with the diapers).
I am at a loss as to what is wrong with me and how to find help. I know that there has to be something wrong with me as my condition worsens but I just can't get a diagnosis from anyone. I am just waiting for the day that it is diagnosed to late.