I am David LaForest
living with ALS
Around November of last year, I started to notice that my head was dropping and about half way through my day I could not hold it up at all. By the time I would get home from work I was exhausted from spending so much energy just trying to hold my head up.
My name is David LaForest and I was just recently diagnosed with ALS on June 23rd of 2021. I started having weird symptoms back in the spring of 2020. Slurred speech after talking for a few minutes, I felt like I was going to choke on my food. Then I started to notice my right arm was getting weak. At one point last summer I was trying to install a closet track on my mother-in-law’s closet that was over my head I was having a really hard time completing the job. I was very frustrated as any other time I could do the job with ease as I am a Maintenance Director for an Assisted Living, Memory and Independent Living property.
Around November of last year, I started to notice that my head was dropping and about half way through my day I could not hold it up at all. By the time I would get home from work I was exhausted from spending so much energy just trying to hold my head up. This only got worse as December rolled around and this dropping head thing started to affect every aspect of my life. At this point I decided to talk to my PCP about what was going on and he suggested that I go see a neurologist.
In January of this year, I found a neurologist and scheduled an appointment around the first week of January. When I told her all of my symptoms, which I thought were not at all connected, she suggested that I had Myasthenia Gravis and ordered an EMG, MRI of my neck and a blood test. She also ordered Mestinon for me to take 3 times a day. My EMG was scheduled for 3 weeks away and my MRI was that week, as well as my blood test. I had a follow up appointment about 30 days later.
By the time my EMG rolled around I was on the Mestinon for 3 weeks and they did not ask me to stop taking this muscle strengthening medication before my EMG. Once I had a follow up appointment with her, she informed me that my Myasthenia came back negative. She did not talk to me about my EMG, but she did point out that she thought I had Radiculopathy, and suggested I go see a pain specialist and a neurosurgeon. At this point she had only spent 5 minuets in person with me with our very first appointment. She did not do an in depth eval with me what so ever.
I ended up having a tele-med visit with a neurosurgeon. This also lasted about 5 minutes where he asked me to get an MRI of my brain. I did as he asked and waited a few more weeks for the results with him telling me everything looked normal and to go back to my original neurologist. When I went back, they informed me there was nothing they could do for me.
At this point my wife and I decided to reach out to a clinic in Scottsdale AZ as it was only a 20-minute drive from where we lived. It took a while to get an actual appointment but once we got in to see our new neurologist, they did a 2-hour exam of my entire body with 2 neurologists. They took the time with me and did a very thorough examination. They then ordered a litany of tests and ordered another EMG without the Mestinon for 48 hours before. They also ordered full cancer screening blood work, Pulmonary Test, Swallow Test. Within 2 months it was down to two options, ALS or Kennedy’s Disease. They ordered a blood test for Kennedy and once that came back negative it was ALS, and here we are now.