How and when I discovered I had ALS.
Updated: 2 days ago
A few of you know this story but realized that I have not told many of you how I came to be diagnosed. I woke up in my home in Hayward, CA on May 4th, 2019. It was a normal day of work but when I woke up I felt like something was wrong in my mouth. I couldn't figure it out so I ignored it. I went to work with my good dog Oly and started my day. That morning, I had a meeting with a manager and during that meeting I noticed I slurred a compound word. I mentioned it the person I was meeting with and they didn't notice it. This happen a few times more and the interesting thing was I could pronounce whatever work I was slurring correctly the second time I tried. But no one else noticed it. This went on for three weeks when I was meeting with my boss Bill Nagel the publisher of the paper. He commented that he noticed I was slurring a word. So at that point I took it more seriously and decided to see my Doctor. I made an appointment and he gave me a full workup suspecting I had a stroke. No dice, I passed the stress test he gave. So he then sent me out for an MRI of my brain and a ultrasound of my throat to see if I had any blocked arteries. That took about two weeks and when I went back and he told me he had done all he could do, the MRI and ultrasound showed I was fine, he then referred me to a Neurologist. I saw him on June 15th. He reviewed my records and then tentatively diagnosed me with myasthenia gravis. This is a serious but livable disease to have. And the good news there was a medicine that should stop my slurring. But after three weeks, the slurring returned and the medicine stopped helping. Side note, I think it was the Placebo affect that caused it to work for a couple of weeks. So the Neurologist wanted me to wait about two months before doing anything else. So by then it was into September and a very good friend of mine Jeff Johnson who was and is head of all Hearst Newspapers working in their New York Tower, called me and asked if I would be willing to fly to New York and get a second opinion at Columbia University Irving Center. I said of course. So flew out there for a three day weekend and saw the doctor on Columbus Day Monday, October 12th. She started to do the ubiquitous strength test that every doctor has done with me. But after I tossed her on her desk a couple times (after warning her) she stopped that and sat down in front of me and stared at my tongue. After doing that she stated that I most definitely did not have myasthenia gravis. I said what to you think I have. She replied not sure but I suspect a soft tissue injury in the back of your head. I want you to get an MRI of that location and I will get you in for a Pin test (This is where the stick a pin in your forehead and one in your tongue and measure the speed the neurons are moving from my brain to my tongue.) So I left the doctors office after the pin test and called Melisa Johnson to tell her what had been discovered. She harangued me about getting the MRI that day. I replied it is a holiday and 2pm doubt I can get that. She insisted I try and suggested the person that schedule me. So I reluctantly called the scheduler and she was able to get me in at 6 PM. So I had the MRI then flew back to California. The Columbia Doctor called me a couple of days later and said the pin test and the MRI did not indicate her theory was accurate and gave me three doctors names at the UCSF Health Center in San Francisco. I wisely discarded the two ALS doctors and selected the one that appeared to focus on Neurology. I made the appointment on November 1st. I went and went through the strength test, twice. Then a second doctor came in and did it all again. Then both doctors had me strip down to underwear only and took up a position on either side of me and starred at me for ten minutes. Then the senior doctor told me to get dressed and came back five minutes later and told me I had Bulbar onset ALS. Because of all the work that had been done before and their ten minute observation of me showed I had some minor tremors in three of my four limbs confirmed that diagnoses in their mind. I said how confident are you? Will you put that in writing. She replied I will certify your are completely disabled. She then asked how are you feeling? I said I have full intellectual understanding of what you told, emotional acceptance will take a while. I left and walked back to the main office and met with Bill Nagel. He was the first one I told. I also told him I was retiring that day. Bill and everyone at Hearst was great about it and Hearst has really exceeded any expectations I could have had about how to handle this. They have been great.
Any ways, that is how I found out. It took about six months but that is fairly quickly for a diagnoses of ALS. There is no definitive test for ALS. It is only after ruling out every other possibility
do they come to an ALS diagnoses.