[John Pollman]

My name is John Pollman and I am 50 years old. (soon to be 51)

A little over three years ago, I went in for a complete physical due to some weakness that I had in my legs. I had a physical on Monday and my doctor ordered an EMG for my legs. I had the EMG early Thursday morning. The doctor doing the test was supposed to just check my legs. But he ended up checking my legs, arms, back, and neck. He didn't say much but told me to go home and he'd give my doctor a call with the results. This was Thursday morning, so I figured I'd hear something on Monday or Tuesday. TWO HOURS later my phone rang and it was my doctor's office. The girl just said "doctor needs to see you ASAP". She asked me to come in the next morning at 8:30 and the doctor would see me. She never said anything about bringing my wife or someone with me.

I got there the next morning and there were several others in the waiting room. I signed in and a soon as I did, the girl behind the counter told me to come right in. THIS DID NOT SOUND GOOD!

I sat down in the examination room, and a few minutes the doctor walked in. He looked at his chart and cut right to the chase. He said "John, from the results of the EMG, it looks like you have ALS." He then followed that up with "If that's the case, there's nothing anyone can do about it". I went numb from head to toe!

There is NO WAY that he (just a GP) had enough info for a diagnosis like that, let alone to tell me in that way, with nobody there for support!

I'm rambling though so I'll wrap it up. So I spent three months thinking that I had about 2 years to live. I ended up seeing a neurologist that said it looked like ALS, but he didn't think so. He sent me to an ALS specialist, and he said the same thing. It turns out that I have Late Onset Tay-Sachs disease! It's an extremely rare form of a disease that normally only affects infants and children and is 100% fatal! Luckily, LOTS isn't generally fatal, but it is degenerative and progressive. I walk with a cane most of the time now, but I'm probably headed for a wheelchair at some point in the future. I'm one of only about 100 confirmed cases in the entire United States.