What is ALS?

 

ALS, or amyotrophic lateral sclerosis, is a disease that destroys voluntary muscles, depriving a person of the use of their legs, arms, the ability to swallow, speak, and breathe. There is no cure, and life expectancy is 3 to 5 years.

​

First Symptoms

​

In September 2023, lying in bed one evening, I noticed small muscle spasms in my abdomen—tiny fasciculations that seemed insignificant. A few weeks later, these spasms began spreading throughout my body, particularly to my legs. Something was changing in me. I had no idea what lay ahead.

In November, I played a tennis match with a colleague. It was the most exhausting match of my life. Every ball I had to chase required tremendous effort. I let many balls go, lacking the strength to run after them. I told myself it was just age or because I hadn’t played sports in a long time. I had no idea what lay ahead.

Another weekend, while taking my son to the swimming pool and normally waiting in the car reading a book, I decided to take a short jog. I ran for two minutes, but my right foot dragged slightly, and running became difficult, so I stopped that day. I felt useless. It was the first time in my life I had abandoned a run after just five minutes. I had no idea what lay ahead.

By February 2024, I was waking up at night with severe, painful calf cramps. A lack of strength also began to appear: one day, while rising from a squatting position, I fell. I had no idea what lay ahead.

A trip to Venice in April 2024 marked a turning point in my ability to walk. As is common when traveling, we walk a lot, and those few days of walking more or less normally were the last time I walked without difficulty. Upon returning from Venice, I was limping. I had no idea what lay ahead.

A few days later, during my lunch break, I was walking in a park when a pull-up bar caught my attention. I thought, “I’ll try one.” I couldn’t do a single pull-up, whereas a few years earlier I could do ten. This began to worry me seriously. I had no idea what lay ahead.

I then decided to see a doctor.

​

The Diagnosis

​

After returning from Venice, I made an appointment with my general practitioner for a home consultation. I explained that I had walking difficulties. He prescribed a cervical spine MRI. Once done, the MRI showed nothing unusual to explain my symptoms. He then prescribed a brain MRI, blood tests… all were negative.

Time passed. I was limping more and more. My doctor concluded that nothing was wrong, as all tests were negative. I could not accept such an explanation. One evening, I decided to go to the emergency room, as the wait for a neurologist appointment was about six months. At that point, I could barely go down the stairs from my bedroom to the living room.

At the ER, no neurologist or neurosurgeon was available. They decided to schedule an appointment for me at Foch Hospital. I had the intuition that what I had wasn’t urgent but was likely serious. I had to go to Foch with an EMG. The EMG revealed nothing unusual. In the meantime, I had done a lot of research myself using ChatGPT and Google. I knew that EMG could diagnose ALS, and I suspected I might have it. So this negative EMG was a huge relief. The neurosurgeon at Foch then suggested additional tests—evoked potentials, other MRIs… all imaging was negative. The surgeon admitted he did not know what I had. I was at an impasse.

The diagnostic process had already been going on for three or four months, and we still had no answer. I consulted other neurosurgeons. I had learned to monitor Doctolib to get quick appointments. The second neurosurgeon suggested surgery, as he observed a too-narrow spinal canal. Back at Foch Hospital, when I reported this second opinion, the Foch neurosurgeon replied verbatim: “I don’t give a damn about what your surgeon says.” No comment. I needed a third opinion.

A third neurosurgeon advised me to see a neurologist. From there, things accelerated. An appointment was made with a neurologist, who suggested repeating another EMG. This was very bad news: I knew EMG results were decisive. I thought I was in the clear, that it wasn’t ALS. I felt like I was back at square one. I had the strong impression she suspected ALS.

The next day, she performed the EMG. The examination lasted an hour, much more thorough than the first. Unfortunately, the result was definitive: ALS. It was September 20, 2024—the worst day of my life. I want to thank her for her kindness and professionalism. I was then referred to Pitié-Salpêtrière Hospital for confirmation by a second neurologist.

​

Administrative Difficulties

​

Social Security
They refused to grant me disability on the grounds that I was already on sick leave. According to their logic, one cannot receive daily benefits while applying for a disability pension, which could take an indefinite time, leaving zero income during the process. After four months, they told me that disability fell under CIPAV, not their system.

​

CIPAV
They told me I wasn’t entitled to a disability pension because my previous year’s income exceeded the social security ceiling. In short, because I had paid too much in social contributions, I was not entitled to protection.

Home Loan Insurance
Extremely long delays—over a year. The implicit objective seems to be to financially pressure you before the insurance kicks in, forcing you to sell your house because you can’t meet monthly mortgage payments, thus avoiding activation of the insurance.

​

Anecdotes

As no physiotherapist would come to my home to perform the necessary movements and mobilizations to prevent pain, I was forced to go to the physiotherapist twice a week. This is extremely difficult given my situation.

My wife and I asked to travel by ambulance. I was completely unprepared for what followed. The paramedics clearly were not trained: they did not perform transfers correctly. Several times, I almost fell. Worse, they showed a deep lack of respect for the patient, grabbing me by my pants. It was simply scandalous.

I stopped using the ambulance and, despite the difficulties, we now go to sessions by car.