I was diagnosed with ALS on February 2, 2023. I was 38 years old at the time. The path to diagnosis was quite long: I had first noticed some twitching in my arms as far back as early summer 2021, but thought little of it. It was not until the following winter, when I noticed sudden weakness in both of my hands that I finally decided to talk to my family doctor about what I was experiencing.
My family doctor referred me to a community neurologist who proceeded to order a wide variety of tests, including needle EMG, nerve conduction study, and blood tests. There were some interesting findings, but all of them were pretty minor and I still had my independence, so nobody was particularly worried.
By the time summer arrived in 2022, the weakness in my hands was becoming harder to ignore. I was having a hard time tying knots, turning the key in my car, and things like that. We were still doing a fair bit of testing, and I was seeing my neurologist every couple of months. Still, there was no clear explanation.
During that summer, I had taken it upon myself to do some research about what might be causing those symptoms. I did not come across ALS right away; other more common diseases, such as MS caught my attention first. In fact, MS was the first possible cause I mentioned to my family and friends when trying to explain what was happening.
Eventually, however, ALS started to seem to match my symptoms more and more closely. By the end of that summer, I had become quite confident that I did in fact have ALS. I explained this to my neurologist, but she was not comfortable making that diagnosis yet.
For the remainder of the year, we continued with various tests, and I had even ordered some of my own MRI imaging to help move things along. A treatment for CIDP was attempted toward the end of the year, but there was no improvement; my hands and forearms were continuing to get weaker.
In the new year, I was referred to another neurologist to get a second look at what was going on. By the time the appointment came around, I was so sure that I had ALS that it was part of how I introduced myself when I arrived at the clinic.
It was at this appointment that I was finally diagnosed with ALS. I was referred to a local multidisciplinary clinic, which I was told would provide me with the supports I would need from that point forward.
The people at the clinic have been very supportive, and have helped point me in the right direction many times. Still, ALS is such a complex disease that even with their support, combined with various Internet resources I had come across in the preceding year, I felt that there was more to be done when it came to supporting ALS patients.
It took me quite a while, almost 6 months of deliberation, but eventually I decided to go ahead and create ALSWiki.org. Though there are many sites like it, I wanted to create a new site that would go deeper into topics of interest to people living with ALS, including myself.
I hope the site provides clear answers and valuable insights for anyone navigating life with ALS.
– Craig Reyenga
Founder, ALSWiki.org