The neurologists at Mayo categorize my changing symptoms as listed in the subject of this message. Over the last 7 years or so I have been tested for things like Lyme disease, HIV, heavy metals, auto-immune, etc, etc at other very reputable institutions as well. For years I simply had weakness with some atrophy in my left arm, but in the last year it has spread to the right arm/shoulders, and back and is more severe than ever. I have lost about 20 pounds of tissue – mostly muscle! Although doctors may change the label they put on my condition, they all say they have no clue what is causing it, so there is no treatment. Apparently there are no research studies either. All efforts appear to go towards ALS, which is admirable, but since I have only lower motor neuron involvement, seemingly with no upper motor neuron involvement, I am left to my own devices to deal with this situation and no help from the medical establishment.
Anyone else in the same boat? What are we going to do?
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