wanttobefreee
New member
- Joined
- Jan 23, 2017
- Messages
- 1
- Reason
- Learn about ALS
- Country
- US
- State
- NY
- City
- New York
Hi everyone,
I just wanted to share my experience so people here might be able to have a peace of mind. I am 32 years old, male, and am otherwise healthy.
Two months ago, I started to have twitching starting in my right foot: my toes would move 24/7 => spread to the calf (while toes still twitching uncontrollably) => and then the thigh. All in only one leg! No pain, no sensational difference, just periodic (not the intermittent ones...) uncontrollable twitching in my calf and foot that would not stop (like a heart beating inside them).
At night I could not fall asleep because of the twitching. When I was finally able to fall asleep for a bit, my leg would suddenly jerk and wake me up. (I still have twitching...). I probably got on average 3-4 hours of sleep since.
At the same time, I noticed that driving became more difficult with my right foot: it became tired after a couple of minutes and I could not easily move from brake to gas. To make things worse, my right foot started to scuff the ground when I was walking: tripped (didn't fall though) multiple times because of that. I really felt something was wrong with my right leg: it felt weak and was stiff all day.
Like most others, I googled my symptoms and came to this site. So for the past month, I was in full panic mode: couldn't sleep, got stressed, more twitching, more worrying, etc. etc. I started doing balance tests, strength tests every day. I noticed that I could not balance well with my right leg. I fell down easily when trying to balance with my right leg while it was so easy using my left leg.
I finally went to see a neurologist, and he did basic strength tests and casually dismissed the possibility of ALS: didn't advise me to get further testing, and just told me to go home and rest. That helped relieve my anxiety for a day, but it came back again since my symptoms did not go away.
So a couple of days ago, I visited another neurologist. He also did basic strength tests and said it was fine, but wanted me to get an EMG just in case. Although he stressed that ALS is not even on the table, I was still panicking like crazy: it was probably one of the most stressful periods in my life. The following day, I went in for an NCS and EMG, and thank God, they were all clean. I am now completely relieved of the panic and worry, and am a free man.
My body is still twitching, I still wake up because of the jerking, I still can't balance well, and my right foot is still scuffing the floor when I walk, but I don't care anymore.
I look back, and there was actually nothing I should have worried about:
- (In a given year), at 32, the probability of getting ALS is less than ~ 1 in a million. To put that in perspective, the probability of dying from a car accident is ~ 1 in 50,000. Probability of dying from alcohol consumption is ~ 1 in 150,000.
- Twitching can happen to anyone anywhere in the body
- If your right leg is your dominant leg, typically, it is easier to balance on your left leg (especially if you played soccer/basketball)
- Walking pattern for left/right leg can be different as long as you don't have a complete foot drop
- If the neuro (or two) says don't worry you should not worry
- More stress/anxiety => more twitching
In the end, for most people, everything is happening in the mind. And I know it is difficult to brush it off, but just wanted to let you know that without true clinical weakness measured by a neuro (not yourself), you have nothing to worry about.
Just get tested, and get an EMG (for peace of mind, not because it is necessary), and continue with your life.
I just wanted to share my experience so people here might be able to have a peace of mind. I am 32 years old, male, and am otherwise healthy.
Two months ago, I started to have twitching starting in my right foot: my toes would move 24/7 => spread to the calf (while toes still twitching uncontrollably) => and then the thigh. All in only one leg! No pain, no sensational difference, just periodic (not the intermittent ones...) uncontrollable twitching in my calf and foot that would not stop (like a heart beating inside them).
At night I could not fall asleep because of the twitching. When I was finally able to fall asleep for a bit, my leg would suddenly jerk and wake me up. (I still have twitching...). I probably got on average 3-4 hours of sleep since.
At the same time, I noticed that driving became more difficult with my right foot: it became tired after a couple of minutes and I could not easily move from brake to gas. To make things worse, my right foot started to scuff the ground when I was walking: tripped (didn't fall though) multiple times because of that. I really felt something was wrong with my right leg: it felt weak and was stiff all day.
Like most others, I googled my symptoms and came to this site. So for the past month, I was in full panic mode: couldn't sleep, got stressed, more twitching, more worrying, etc. etc. I started doing balance tests, strength tests every day. I noticed that I could not balance well with my right leg. I fell down easily when trying to balance with my right leg while it was so easy using my left leg.
I finally went to see a neurologist, and he did basic strength tests and casually dismissed the possibility of ALS: didn't advise me to get further testing, and just told me to go home and rest. That helped relieve my anxiety for a day, but it came back again since my symptoms did not go away.
So a couple of days ago, I visited another neurologist. He also did basic strength tests and said it was fine, but wanted me to get an EMG just in case. Although he stressed that ALS is not even on the table, I was still panicking like crazy: it was probably one of the most stressful periods in my life. The following day, I went in for an NCS and EMG, and thank God, they were all clean. I am now completely relieved of the panic and worry, and am a free man.
My body is still twitching, I still wake up because of the jerking, I still can't balance well, and my right foot is still scuffing the floor when I walk, but I don't care anymore.
I look back, and there was actually nothing I should have worried about:
- (In a given year), at 32, the probability of getting ALS is less than ~ 1 in a million. To put that in perspective, the probability of dying from a car accident is ~ 1 in 50,000. Probability of dying from alcohol consumption is ~ 1 in 150,000.
- Twitching can happen to anyone anywhere in the body
- If your right leg is your dominant leg, typically, it is easier to balance on your left leg (especially if you played soccer/basketball)
- Walking pattern for left/right leg can be different as long as you don't have a complete foot drop
- If the neuro (or two) says don't worry you should not worry
- More stress/anxiety => more twitching
In the end, for most people, everything is happening in the mind. And I know it is difficult to brush it off, but just wanted to let you know that without true clinical weakness measured by a neuro (not yourself), you have nothing to worry about.
Just get tested, and get an EMG (for peace of mind, not because it is necessary), and continue with your life.
