Waiting for the inevitable
Hi All,
Male 50.
I've resisted posting on here but I keep an eye on the sub most days.
The last few weeks have been really hard. I started my journey back in January 2024, with fairly aggressive twitching in my thighs, I had been training hard and put it down to that. The twitching subsided after a week but never disappeared, I then had a twitch in my left eye for a full month non-stop.
By April 2025 I was twitching 24/7 in calves and feet with quite a bit of activity in my thighs, like singles and doubles every few minutes, I was also getting single twitches all over my body, my back, shoulders, abdomen, arms, face, neck, glutes, these were pretty frequent.
In May I noticed my first true tongue twitch, on the side of my tongue, not relentless but I could see it and feel it.
I hit rock bottom and ended up on Sertraline, I went to A&E desperately trying to see a neurologist, had many GP appointments, everyone of them didna clinical exam and told me I didn't have MND, my family and my wife were patient and supportive but they didn't understand why I couldn't let this go and why I was questioning the professionals, my sister even stopped talking to me.
In June 2025 I had a completely clean EMG and clinical, not even a single twitch, the neurologist put my issues down to stress, he shook my hand, told me I was going to have a long life because of my fitness level and waved goodbye.
Now I had been told by every professional that I'd seen that I didn't have MND, the expectation was that I just move on and forget about it.
I desperately tried to put this behind me, the Sertraline helped my mood but the constant twitching meant I was unable to forget, I was still training and putting in some decent 5k times (for me!) and running well for long distance, still lifting well at the gym, but still deeply concerned that I was just waiting for the inevitable, I chose not to talk to my family about my ongoing concerns, I was asking too much and they put my fears down to health anxiety, they had moved on.
In February I asked the Neurologist if he was willing to see me again for another exam and EMG, I made the appointment online, he cancelled the appointment and told me it was pointless and would feed my anxiety.
I spoke with my GP and asked whether she could arrange another EMG and she also refused for the same reasons. It was and is a pretty lonely time.
I did get to see a neurologist in the end, not the same one. He gave me clinical exam and told me I don't have MND, he didn't recommend a follow up or an EMG
The last few weeks have got worse, I have started to get cramp, in my neck, hands, feet, back and shoulders and abdomen, they aren't full on cramps, they feel like micro cramps, like small bits of my muscle want to cramp, they can come in waves, especially if I am in bed, where it feels like cramp rushes from one muscle to the next.
I ran 10 miles last Sunday and whilst I was able to manage the run I did not feel good, I felt slow and struggled, my legs took almost a week to recover.
I went to the gym on Monday and still my legs are heavy and tired today, I've been missing run club because it genuinely feels like I can't keep up with the people I'd normally comfortably beat, my legs just don't feel strong. I can still do all of the normal things, walk on heels and toes, my grip strength is good, but my calf muscles are really tight and my twitching in these muscles actually hurts, my legs just feel they lack spring and strength, when I ran 5k in Tuesday I couldn't get to to my fast pace even with a really strong wind behind me.
Since I began twitching back in January 2024 I haven't ever felt weak, I've always feared it happening and now it feels like it's starting, my hands feel different as do my feet, they feel a bit more painful in the joints when I lift or run, I have been getting a strange heaviness in my toes and fingers, it's difficult to explain, it doesn't last long, it's an odd feeling, the twitching is much more present now in my upper body, especially my right arm from my shoulder to my forearm, not constant but plenty throughout the day.
I am convinced that I am going to be an outlier, one of the fraction of people that did actually start with twitching well before weakness, despite being told by everyone that I am OK. I have now paid to see a neurologist in June and I am hoping he'll refer me for an EMG, I am convinced beyond convinced that it will now show denervation, I can't otherwise understand the progression of the cramps and the relentless widespread twitching and now my legs definitely feel different.