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I just wanted to take a moment and wish everyone Happy Holidays and lets hope that the new year ahead will bring some more breakthroughs towards stopping this dreadful disease in it's tracks!

I am hoping someone can help me out with some information. I have an appointment at the Mayo Clinic in Rochester, MN with Dr Sorenson on Jan 28. I have a new symptom that has developed in the past 2 weeks. It is getting increasingly hard for me to chew food. My lower jaw gets fatigued and it...

Can someone tell me how Bulbar symptoms start and how do they feel? I've had a swallow study done and a nerve conduction test on my tongue and throat and there are parts of my esophogus that the muscles no longer work, so food sticks in it and I have to drink to get it down. I feel like there...

I finally got a diagnosis, not sure if I fully understand what it means at this point though. I had a number of tests done after the negative EMG was done a number of weeks ago. These tests were aimed at testing the autonomic nerves. It did show that this group of nerves is being affected. My...

First let me give you a bit of history, my father died of ALS in 1995, he was diagnosed in 1993 after 2 years of testing. When he did finally get his diagnosed, he was given 2 years to live, he made it 14 months. He had Bulbar form ALS, it all started on the top of his head and face. We pulled...