Mistaken for ALS, One Man Shares His Story of Late Onset Tay-Sachs

April 1, 2015

Three and a half years ago I went in for a routine physical. The doctor ordered an EMG because of some twitching he saw in my legs. The EMG was done and two hours after the test, I got a call that just said “the doctor needs to see you as soon as possible.”

I went in the next morning and was coldly and abruptly told that I had ALS and there was nothing anyone could do about it. I went numb from head to toe!

After seeing two neurologists and about three months of believing I had about two years to live, it was confirmed that I do not have ALS, but Late Onset Tay-Sachs Disease. The thing of it is that Tay-Sachs normally only affects infants and children. There is no cure or treatment and it’s 100% fatal.

Thankfully, the Late Onset version isn’t generally fatal, but it is degenerative and progressive. I walk with a cane now and can’t climb stairs and I can barely stand up from a seated position. I am currently in two research studies to try to help find a cure for this evil disease that is probably going to put me in a wheelchair eventually.

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