"The Results Are In" Chapter 4
November 2021:
I had another appointment with Doogie and his boss - a senior neurologist. This time, though, I went alone. We went over the MRI, did another evaluation of my strength, and completed an Electromyography. An "EMG" is a diagnostic procedure to assess the health of muscles and the nerve cells that control them - also known as motor neurons. For this test, the doctor places two probes on certain areas of the body, then shocks the shit out of you to get a reading on the machine. He then moves the probes and does it again several times in different locations. The EMG results can reveal nerve dysfunction, muscle dysfunction, or problems with nerve-to-muscle signal transmission. The EMG is basically one of the surest test to determine ALS after ruling out other diseases.
After speaking with both doctors, they told me that they are confident that I have a motor neuron disease, but cannot officially confirm ALS. The results of the EMG did not show them the typical response they were looking for. He then explained to me what ALS was, and that it is possible I have ALS, but to not be discouraged by what you see on the web because you can go down a rabbit hole very fast. The doc stated that he wanted to refer me to the National Institutes of Health (NIH), one of the world's foremost medical research centers. I thought, GREAT - someone would be able to tell me what is going on. Unfortunately, though, it was apparently a process that could take 6 months just to get accepted. At the end of the visit, the only thing they concretely told me was that they would like to see me again in five weeks and go from there.
On my way out I thought, "5 WEEKS? What the @#$%,?!? It could be 6 months for NHI. What if I am dead by then?!" On my drive home, I spoke to Laura about the appointment. By the time I got home, she already Google-Doctored me. Not good - I HATE seeing my wife cry, and I felt absolutely helpless.
We decided that another doctor and another opinion would be in order. With the holidays coming and the kids being home, though, we waited a bit. I made another appointment to see another neurologist in the private sector, but by the time I got that appointment it was February in 2022.
The new neurologist's bedside manner was not the best. I gave him a letter from the past visits I had had with the other doctors, and he went through the same strength and mobility tests as the others. After about 15 minutes, he said I had ALS. He said I needed to go home and get my things in order - I had 6-12 months to live.
I left that appointment and don’t really remember driving home. I called my boss at the time, and he and his wife were just who God wanted me to speak with. They took the time to talk to me when I needed it the most. When I got home, I looked at Laura and told her what the doctor said and began to cry. I've only cried a handful of times in the past 27 years. After a few minutes, Laura looked up at me and said, "This is it. We either choose to live, or we choose to die. Crying about it will not help, and if we believe in God and have faith, then we must believe in peace." A that moment I chose to Live with ALS.
We had an appointment to see the same doctor the following Thursday, and he told me to bring my wife. So on Thursday we went back - together. This time, he did an extensive EMG. Once again, like the first doctor, he did not get the results he wanted to see. He looked at Laura and I and could not confirm ALS. The same doctor who only three days earlier told me to get my things in order was stepping back on his diagnosis. By now, I had lost about 20lbs and we were discussing a feeding tube. The doctor told us that after they placed a feeding tube, I would no longer eat meals (maybe ice cream), and I would also lose the ability to speak. I had been eating with some difficulty at this point already - what would take you 10 min to eat would take me an hour, but nonetheless, I was eating. I was able to speak and be understood despite a slur. As far as Laura and I were concerned, we did not have a diagnosis and I still had the ability to eat and speak. A feeding tube was not an option. And let’s just say, the doctor was wrong again, but more on that later. The only productive thing he really did for me was to refer me to Johns Hopkins. Can you guess how long that took? Yup! Another three months.
God is great and always gives us what we need. A few weeks earlier a very good friend (sister) called as and told us she wanted to visit as she felt something telling her she had to be here. At that time we did not have the appointment set up yet so we had no idea what was going to happen. On that Thursday she came to visit over the next few days. Talk about timing she was the rock both Laura and I needed at that time.
In May, we finally had a meeting with Johns Hopkins. Thankfully, my fourth neurologist was also the head of the department. After reviewing the records and doing some hands on tests, he introduced a new one. The "Amyotrophic Lateral Sclerosis Functional Rating Scale" (ALSFRS) is an instrument for evaluating the functional status of patients with Amyotrophic Lateral Sclerosis. It can be used to monitor functional change in a patient over time. The ALSFRS measures 12 aspects of physical function, ranging from one’s ability to swallow and use utensils to climbing stairs and breathing. Each function is scored from 4 (normal) to 0 (no ability), with a maximum total score of 48 and a minimum total score of 0. At that time I was rating a score of 42. Once a point is lost you cannot gain them back. One point can be the difference between walking on my own or needing a wheelchair, or breathing on my own or needing assistance to do so. After he was finally done, he gave me an answer: I officially have ALS.
Pro Tip - when you send me a text or PM and ask me how I’m feeling? Consider asking me about my ALSFSR score that day and you will really know how things are going.
He told us he wanted me on a feeding tube as soon as possible. I could still eat and I could still speak - the tube would go directly into my stomach. He also told me that the average life span is 2-5 years, not the 6-12 months I'd been quoted.
FINALLY - I had a doctor with compassion and knowledge on what I needed to do, and he led a team of doctors specializing in ALS.
Two weeks later, I had a feeding tube placed and was officially on the road to deal with my ALS journey.
Read more about the ALSFRS-R at the below link.
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