ALS is notoriously difficult to diagnose. From everything that I have read and studied it generally takes more than one year to begin the process of elimination required to come to the ALS diagnosis. This diagnosis is a last resort, as it is required to eliminate all other possible diseases and conditions to the point where ALS is the only option left. This is my story about the long process of being diagnosed with ALS.
SO THERE I WAS… That’s how all great stories begin!
In October of 2021 I had a project to do video capture and photography aboard a surface ship at the Navy base in Everett, WA. It was starting to get cold around this time, maybe in the 40 degree Fahrenheit range, and being on the waterfront it was very windy, rainy and overcast. During the morning session of work myself and two other people were top side on the ship for most of the morning. Even with gloves my hands were getting very cold and stiff. When we broke for lunch, my left hand was clinched and I could not make it relax or uncurl no matter what I tried. During our lunch break I ran my left hand under very warm water and eventually it relaxed and I regained control. This was the first instance experiencing loss of muscle control and strength, but there were abnormal circumstances involved, so I dismissed it as a non-event.
At this time and even before this event, I had always been into fitness especially strength training and power lifting. In my late 40s and early 50s I was the strongest I had ever been squatting around 600lbs, deadlifting around 500lbs, and leg pressing over 1000lbs… I was killing it at the gym! After the cold hand incident described above, I started to notice a major reduction in grip strength in my left hand which severely limited the amount of weight I could lift. I thought maybe I had just strained the muscles in my hand and left forearm and needed some recovery time so I started to go lighter on weights and higher on reps to compensate and maintain strength. Over the next six months the weakness became more prevalent to the point that I couldn’t ignore it anymore. I didn’t seek any medical attention just took a break from heavy lifting. This was also around the time that COVID was happening so going to the gym and having to mask up wasn’t particularly enjoyable either.
Fast forward another six months and the weakness in my left hand was still progressing but not to the point that it was unusable just annoying enough for me to mention it to my wife. Around the middle of 2022, I started to notice a change in my walking gate and an odd feeling of weakness in my left leg. Again this was just very small changes that I noticed but didn’t focus on as a problem at the time. Like the weakness in my hand this change in my leg strength worsened over the next six months. About the end of 2022, I realized I was having trouble flexing my left foot and I was dragging my left leg when I got really tired or fatigued. Keep in mind that these changes were very subtle and over a long period of time so I didn’t register them as significant… I felt like this was just me starting to feel my age.
It wasn’t until the end of 2022 and going into the early months of 2023 that I started to discuss these changes more seriously with my primary care physician. A couple of routine physical examinations we’re done but nothing serious was noted at the time. During the same time frame I had a few other major health issues arise including pinched nerves in my neck that caused pretty severe pain in my right arm and along the right side of my body. I attributed the weakness on my left side to possibly be related to that condition and accepted this as a temporary condition that would get better over time. The weakness in my left hand continued to worsen and I noticed a visual change in the muscle mass of my left hand. I’ve always had very strong, muscular and beefy hands and now I was starting to see the muscles of my hand get smaller so that I could see a concave hollowing of the muscle area between the index finger and the thumb. This was the point that I realized something significant was happening and I needed to figure out what it was.
I requested my first referral from my primary care physician to the local neurologist for an evaluation. I thought going to a specialist of this sort would bring more trained eyes to evaluate my condition and provide avenues of medical attention that my primary care physician couldn’t. Boy was I wrong! The neurologist did a few manual tests of reflexes and dexterity but it felt like just a formality. The end result of that first encounter was the neurologist telling me that this was all due to my diabetes and if I just got my sugar under control I could live a long healthy life and all of this would resolve by itself. I wasn’t happy with the results but he was the expert so I took that into consideration and moved on.
The weakness on my left side continued to worsen and my left hand continued to shrink as the muscles seem to be deteriorating more and more over time. I started to do my own research on possible conditions and that led to my discovery of neurological diseases like ALS and multiple sclerosis. I wasn’t sure what was going on with my body but I definitely knew I needed A more thorough investigation and testing from a neurologist. Once again I requested a referral from my primary care physician to the local neurologist so that I could request specialized testing that I had discovered in my own research. Specifically, I was looking for a referral to get nerve conduction studies done as well as electromyography testing to evaluate my nervous system. While meeting with the local neurologist I made it very well known that I was not satisfied with the initial evaluation and that the testing I was requesting was consistent with my own investigation. Again, this neurologist downplayed my concerns and did the minimum required to dismiss my symptoms. The only thing that gave him a little bit of pause was the change in appearance of the muscles in my left hand. On those grounds, he granted me access to a third party and local neurologist outside of our normal network which turned out to be the best possible decision for me.
It took a few months for me to be able to see the neurologist and get the testing performed. During this time however, I was still doing my own research and I remember the exact moment that I knew or had a very strong Inclination that I had ALS. I was watching a YouTube video about a man in his early 50s who had been recently diagnosed and was in the early stages of the disease. It seemed that we had very similar physical manifestations, but the thing that grabbed my attention was his hand… IT LOOKED LIKE MINE! I started to do a lot more research on what ALS was and the symptoms associated with it. As I learned more about the disease, my own physical condition and symptoms were starting to align more and more.
Finally the day came to see the new neurologist and get the nerve conduction study and electromyography testing performed. In talking with the new Doctor, I let him know that I had a concern that I might have ALS. In our initial discussions I asked him to not take anything for granted or make any assumptions based on the evaluations performed by the 1st neurologist and to do everything he could to come to a final and well documented diagnosis. At this point I had already started to also research working with the veterans administration as an alternative to my primary care physician and the potential of having ALS. My first visit to the neurologist I was supposed to have nerve conduction studies and electromyography performed on both sides of my body however that’s not how it worked out. It’s probably not a good thing when a neurologist says ”I’ve never seen anything like these test results”. As the doctor performed the testing on my right arm and leg the results were so not normal that it took extra time for him to verify that his systems were working correctly and repeat the testing 2 times. That didn’t leave enough time to perform the tests on the left side of my body so we had to reschedule so that he could both look at the test results in more depths and confirm the results through a second session. Fast forward another few months and we went back to the neurologist for a second round of testing which confirmed the irregularities he had seen on the first round of testing but my left side was even farther out of the norm. It was at this point that I had my first official testing proving that something was wrong with my nervous system and to which pointed toward a small group of neurological conditions that needed further testing to pinpoint. The doctor ordered and I performed multiple genetic tests for very specific diseases that all kept coming back negative or inconclusive and we slowly we’re eliminating the best of the worst case conditions. Around December of 2023 the doctor requested that I schedule an appointment for early 2024 and I was hoping that would be the official diagnosis appointment. However the next available appointment for the neurologist wasn’t until April or May of that year and I was starting to feel like he just didn’t want to say the obvious answer that I had ALS.
At the end of 2023 I was fairly certain of the pending diagnosis, I was just waiting to officially receive it. In my research about ALS I had noticed several articles about The United states veterans administration classifying ALS as a presumptive service connected disability. I began to do research on the documentation and testing required by the VA as well as the medical benefits available to those who qualify. I had been procrastinating on contacting and getting involved with the health care system run by the VA because I did not have a definitive diagnosis yet and I didn’t want to have to perform all of the same tests again. Realizing that I had a few months before I saw the neurologist again I decided on a whim to start the secondary or back up diagnosis process through the VA. To my surprise I got my first phone interview with a doctor at the VA within a week and during that first call I basically told him that I needed to see a specialist in the neurology department and supplied my test results and documentation supporting that request. Just two weeks later I was scheduled for and ALS evaluation at the Seattle VA hospital and I was both dreadful and happy at the same time!
The day of my ALS diagnosis appointment with the Seattle VA hospital, both my wife and I were expecting this to be a start of many trips, tests and significant frustration in the diagnosis process. Hoping to avoid redoing tests and giving the doctors as much information as possible to not dismiss my concerns I had brought all the paperwork I could muster including test results from the neurologist who performed nerve conduction and electromyography tests previously. We met with two different doctors that day, both of them were ALS specialists from the university of Washington’s ALS center of excellence neurological department. So as experts go these were the best of the best, the brightest and most knowledgeable ALS doctors available. The lead doctor performed a very thorough physical exam looking at things that the other neurologists hadn’t even mentioned as evaluation points previously. Then they looked at the printouts of my electromyography testing which was very thorough and evidently captured precisely what they needed to definitively diagnose my condition as ALS.
I thought I was ready for the official diagnosis… I was not!! The entire diagnosis process had many tests to eliminate possibilities and all of those possibilities we’re far better that the diagnosis I was now looking at. Both Stephenie and I were so relieved to finally have an answer but it was the worst possible answer! The complete diagnosis phase for me took more than a year to complete and the total time from the onset of noticeable physical ALS symptoms was approximately 2 1/2 years.
