When Michael Stone was hit by tightness in his left foot and sudden twitching in his early 20s, he blamed it on his waiter job.
But the actual cause was deadly and life-wrecking motor neurone disease (MND), also known as ‘locked in syndrome’.
Three years later, in February this year, the now 25-year-old from San Marcos in Texas was diagnosed with amyotrophic lateral sclerosis (ALS) — the most common form of MND.
ALS claimed the life of Sandra Bullock’s partner Bryan Randall in 2023 and the acclaimed scientist Stephen Hawking famously suffered from it.
Now, in a series of Instagram reels, watched over 20,000 times, he has told of the early warning signs he suffered before his diagnosis.
The most noticeable was involuntary muscle twitching — a common phenomenon as you fall asleep — but often linked to stress and caffeine use.
The twitches can be subtle, strong enough to feel but unlikely to cause jerking or big, noticeable movements, and most commonly affect the eyelids, arms, hands, fingers, legs, and feet.
Mr Stone told his followers: ‘I was a server serving at a restaurant in 2022 and the first thing I noticed was that my left foot just felt a little different. It was more like tightness.
Earlier this year in February 25-year-old Michael Stone from San Marcos in Texas , was diagnosed with amyotrophic lateral sclerosis (ALS) — the most common form of MND
‘I was working a lot of 12 hour long shifts so I just thought that I needed to stay off my feet or I was on my feet too much.
‘But right after that I noticed some twitching on top of my left foot and that was weird for me.
‘Eventually that twitching spread up my leg to my calf, my left thigh, the left side of my body and my left arm.
‘Then I had twitching everywhere, all over my body.’
In a separate video posted last month explaining what his diagnosis and ALS means, he added: ‘For the past few years I’ve been dealing with a range of symptoms such as muscle weakness, muscle stiffness, twitching in my muscles.
‘Over the last few months I was starting to notice that I was having some problems breathing, specifically when lying down.
‘It’s been a really scary journey, especially at the beginning when I was seeing a lot of doctors and a lot of specialists and nobody could figure out what was going on with me.
‘I kept going to all these well-known doctors and they all kept saying the same thing like “well something is definitely going on, but I’m not the person that is going to be able to figure it out for you”.
In a series of Instagram reels, watched over 20,000 times, he has told of the early warning signs he suffered before his diagnosis
ALS or ‘locked-in’ syndrome can lead to paralysis and eventually death. The acclaimed scientist Stephen Hawking famously suffered from it
‘Then I would get shipped off to the next doctor. It was two and a half years of that.’
He said: ‘ALS is usually diagnosed in people between the ages of 50 and 70. I’m 25.
‘When my doctors first saw my symptoms they were completely stumped.
‘After I ended up in a geneticist’s office in Arizona, they found I have a very rare genetic mutation that is known to indirectly cause ALS and other types of neurodegenerative diseases through a process called glutamate excitotoxicity.’
This process occurs when excessive glutamate — the brain’s main neurotransmitter — allow high levels of calcium into neurons damaging and destroying them.
ALS is a rare condition that progressively damages parts of the nervous system.
Mr Stone said: ‘Of course I’m scared, I’m terrified.
‘Every time I think of my future and what is to come and what will happen to me, what’s already happening to me, it terrifies me.
ALS also claimed the life of Sandra Bullock’s partner Bryan Randall (pictured with Sandra in 2018) in 2023
Leeds Rhinos star Rob Burrow (pictured) died last year at the age of just 41 after a four-and-a-half-year battle with MND
This rare and incurable condition affects the brain and nerves, robbing sufferers of their ability to move, to eat and eventually breathe. Pictured, Rob Burrow in 2013
‘But for me, it’s not about what’s on your plate. It’s about what you do with your leftovers.
‘I’m not going to let fear control my life and stop me from living because I still have so much life left to live.’
He added: ‘If I give in to the fear I’m not going to be able to do that.
‘That doesn’t mean I don’t let myself sit with these feelings and let myself mourn my situation, because I do.
‘I’ve just learned tools that have helped me so much.’
Around 5,000 adults in the UK have MND and there is a one in 300 risk of developing the condition over the course of a person’s life.
Life expectancy for about half of those with the condition is between just two and five years from the onset of symptoms. But these can worsen rapidly.
Some people may live for up to 10 years, and, in rarer circumstances, even longer.
Along with twitches, cramps and muscle weakness are among the early signs of the condition, along with slurred speech and weight loss.
There is no cure but doctors can provide treatments to help reduce the impact it has on a person’s life.
The exact cause is largely unknown, but current research points towards a complex interplay of genetic, environmental, and possibly lifestyle factors — and it often hits seemingly fit and healthy people.
Last year, Leeds Rhinos star Rob Burrow, 41, died after a four-and-a-half-year battle with the condition.
Locked-in syndrome (LIS) is a rare neurological disorder that can also occur in some progressive cases of ALS.