HengLi1986
New member
- Joined
- Jan 3, 2019
- Messages
- 3
- Reason
- Learn about ALS
- Country
- CA
- State
- AB
- City
- Calgary
Hi there
Great respect to your forum and the great people that are fighting the disease, friends and care givers! ALS is a shocking tragedy for humanity in 2019, 150 years after its discovery still no cure.
About myself
I'm Asian, live in Calgary, Canada. I'm 33, a father of 2 lovely kids at age of 1.5 and 4. I do a lot of active sport, was training for triathlon, I have basically a non-stop schedule of training between cycling, swimming and running among my days. My running VO2 Max is 48 which is between excellent and good in adult at my age group. My BMI is reduced from 26.8 to 23.6 in the last 3 years since I increased my workout routine. Before that I was a long time road cyclist.
What cause my concern:
In the past month I started to build concerns of ALS based on what's been happening to my body. Here are the elements of concerns:
1. Thenar twitch and atrophy: My right hand (primary hand) thenar began to have twitching which is my first notice of something is not right. Twitchings last from 1-2 glitch to 5~8 times at its worst and happens 5-20 times a day. I attribute it to BSF and ignored for a little while. 3weeks later, I observed a dent in the thenar, which is exactly the line that twitches everyday, and looks like it is some kind of atrophy (agreed by my family doc).
2. I occasionally choke or drop my saliva out of mouth, after a further understanding of ALS, I started to count the frequency. I likely to have a choke during drinking water on average every 3 days, most time just my saliva went too deep into the throat that I have to clear it out, but sometimes chock when drinking fast, say once a week. I don't know if this is normal for adult.
But, I have very thick lip and tend to leak a drip of saliva for several years.
3. Other twitches fire around my lag, foot, mouth randomly throughout each and every day.
4. My right foot have a tendency of little pain that feels it tend to cramp after swimming and cycling.
But some positive factors:
1. Still very powerful on each and every part of my muscles, the thenar that I notice the dent, although feels twitching and occasional cramping tendency, can lift 25kg weight with only thumb and index finger. The twitching goes quieter when I exert a lot of force on the thumb, e.g. 10 push ups with 10 fingers
2. Same hand with the twitching issue feels numb and tingling with all fingers, I know that ALS does not cause numbness. The other thing is it feels like the twitching sometimes is triggered by mechanical stress on the palm (driving when medium nerve press on gear shifter or steer wheel), which implies it is very likely that it's just local, while other times it goes on its own.
Numbness is felt during basic check for carpal tunnel syndrome. Clear reason for compression of the median nerve can be attributed to my long cycling history.
3. No hyperreflexia during clinical test.
Fear element and life ruining factors
Since the first of these elements onset, symptoms worth noticing comes a bit more each day. I can't really decide to isolate each of them or put them together which creates a lot of fear. Nor could I know if these are the mimics from the fear of what I read about ALS online.
My family doctor booked me into a neurologist, but that's 5 month till my first visit to him, then no one knows how long will a definitive test take (MRI, EMG). I talked to my wife but she's hiding her feeling pretty far from me. I feel trapped and alone with this intensifying fear. My kids still runs around me without any understanding of what I'm thinking about.
Bearing all these heavy thoughts, I still have to keep working and keep the kids happy, then it consumes every rest of my minutes to research into ALS. The only happy thing I enjoy is after the exhausted anxiety, I could have a deep and sound sleep.
Life in front of me splits into two possibilities, I have to work hard playing my roles on the scenario that I'm a healthy person and in the mean time think hard of what could happen. This situation itself is desperation.
Really hope I could get some support from all of you.
Happy 2019.
Great respect to your forum and the great people that are fighting the disease, friends and care givers! ALS is a shocking tragedy for humanity in 2019, 150 years after its discovery still no cure.
About myself
I'm Asian, live in Calgary, Canada. I'm 33, a father of 2 lovely kids at age of 1.5 and 4. I do a lot of active sport, was training for triathlon, I have basically a non-stop schedule of training between cycling, swimming and running among my days. My running VO2 Max is 48 which is between excellent and good in adult at my age group. My BMI is reduced from 26.8 to 23.6 in the last 3 years since I increased my workout routine. Before that I was a long time road cyclist.
What cause my concern:
In the past month I started to build concerns of ALS based on what's been happening to my body. Here are the elements of concerns:
1. Thenar twitch and atrophy: My right hand (primary hand) thenar began to have twitching which is my first notice of something is not right. Twitchings last from 1-2 glitch to 5~8 times at its worst and happens 5-20 times a day. I attribute it to BSF and ignored for a little while. 3weeks later, I observed a dent in the thenar, which is exactly the line that twitches everyday, and looks like it is some kind of atrophy (agreed by my family doc).
2. I occasionally choke or drop my saliva out of mouth, after a further understanding of ALS, I started to count the frequency. I likely to have a choke during drinking water on average every 3 days, most time just my saliva went too deep into the throat that I have to clear it out, but sometimes chock when drinking fast, say once a week. I don't know if this is normal for adult.
But, I have very thick lip and tend to leak a drip of saliva for several years.
3. Other twitches fire around my lag, foot, mouth randomly throughout each and every day.
4. My right foot have a tendency of little pain that feels it tend to cramp after swimming and cycling.
But some positive factors:
1. Still very powerful on each and every part of my muscles, the thenar that I notice the dent, although feels twitching and occasional cramping tendency, can lift 25kg weight with only thumb and index finger. The twitching goes quieter when I exert a lot of force on the thumb, e.g. 10 push ups with 10 fingers
2. Same hand with the twitching issue feels numb and tingling with all fingers, I know that ALS does not cause numbness. The other thing is it feels like the twitching sometimes is triggered by mechanical stress on the palm (driving when medium nerve press on gear shifter or steer wheel), which implies it is very likely that it's just local, while other times it goes on its own.
Numbness is felt during basic check for carpal tunnel syndrome. Clear reason for compression of the median nerve can be attributed to my long cycling history.
3. No hyperreflexia during clinical test.
Fear element and life ruining factors
Since the first of these elements onset, symptoms worth noticing comes a bit more each day. I can't really decide to isolate each of them or put them together which creates a lot of fear. Nor could I know if these are the mimics from the fear of what I read about ALS online.
My family doctor booked me into a neurologist, but that's 5 month till my first visit to him, then no one knows how long will a definitive test take (MRI, EMG). I talked to my wife but she's hiding her feeling pretty far from me. I feel trapped and alone with this intensifying fear. My kids still runs around me without any understanding of what I'm thinking about.
Bearing all these heavy thoughts, I still have to keep working and keep the kids happy, then it consumes every rest of my minutes to research into ALS. The only happy thing I enjoy is after the exhausted anxiety, I could have a deep and sound sleep.
Life in front of me splits into two possibilities, I have to work hard playing my roles on the scenario that I'm a healthy person and in the mean time think hard of what could happen. This situation itself is desperation.
Really hope I could get some support from all of you.
Happy 2019.