Status
Not open for further replies.

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.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,362
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Hi, Heng, and happy 2019 to you, too. With normal strength, we will not see ALS in twitching or saliva buildup that you report is pre-existing. ALS does not present with R hand/R foot/bulbar onset all at once as you describe.

Thenar atrophy as you know can be caused by median nerve injury or compression, which as you say can be attributed to cycling. It is always worth keeping up on the latest pressure-reducing gloves/handlebars and I see many guides to reducing the pressure with a given biking setup, including equipment positioning and targeted stretches pre/post riding.

So in the intervening five months before your neuro appointment, I would stop wasting your time/fueling your anxiety by researching ALS, and instead research ways to reduce the pressure on your arms, and ask some fellow athletes/trainers to look at your foot position while riding/running as well.

If you find it impossible to stop worrying, you might also use that time to consider counseling to explore why you might be worrying so much.

Best,
Laurie
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,682
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
I wouldn’t be worried based on your current symptoms.

Twitching is common, nonspecific, and meaningless. It doesn’t matter how frequently or where you twitch, so I don’t recommend counting the twitches because it will only add to your anxiety.

Atrophy can only really be assessed by a physician. Even if you do have atrophy in your thenar muscle, chances are that it’s due to a localized nerve, joint, or tendon problem.

You really haven’t described anything having to do with muscle function failure, such as losing pinch strength, having difficulty tying laces or opening tabs, etc. The choking is pretty nonspecific, and I don’t consider that an example of failure.

So it really doesn’t sound worrisome for ALS. I’d recommend living your life, but not overtraining. Meanwhile, time will tell. Given the unlikely scenario of ALS, waiting 5 months to see a neurologist is not unreasonable. Work with your primary physician in the meantime.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,026
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
HengLi, my husband is a veteran road racer, now in his 50's. It gets harder and harder on your body as you get older. The toll it can take on your body is not a steady nickle and dime, but a pretty steep curve of wear starting in your early 30's. He's got nerve impingement in one wrist and in the opposing hip, along with a whole host of other issues. He had to make some pretty comprehensive changes to his training and bike set up in his early 40's to enable him to continue cycling at his prior level without continuing to injure himself.

If you are also training in other sports, you may need a complete training overhaul in posture, equipment and diet to allow for the demands of an aging body (hard truth- sorry!). I recommend you find a physio who's familiar with cycling who can do a complete assessment of you on your bike and a running gait analysis to see if there are some issues causing imbalance and to provide some feedback about stretching and strengthening, posture, etc to see if you can improve performance and mitigate injury.

Specialist referrals in Canada are expedited if a doctor feels there is something serious and immediate action is needed. 5 months before your neuro appointment means your doc doesn't think it's an emergency, despite what it feels like to you. You can call the neuro's office and ask them to be on their wait list for last minute cancellations. That may get you in sooner.

Talk to your doctor about counseling. 5 months living with the kind of stress you're feeling will only add to your symptom burden and make it impossible for you to live with the hypervigilance to appear to be experiencing.
 

HengLi1986

New member
Joined
Jan 3, 2019
Messages
3
Reason
Learn about ALS
Country
CA
State
AB
City
Calgary
Thanks for all of your replies. Your respond somehow reliefs a lot of my stress, and I feel more positive today. Shiftkicker, My cat is looks almost the same as yours.
I really hope 'definitive weakness' can be emphasized in general education of ALS so that could save a lot of anxiety, if that is my correct understanding from your replies.
Thank you for all your kind help and advises. Will come back if I have further concerns.
 

HengLi1986

New member
Joined
Jan 3, 2019
Messages
3
Reason
Learn about ALS
Country
CA
State
AB
City
Calgary
One more question to all your kind hearts, through several readings in other post replies, could it be understood that ALS weakness present before muscle atrophy? Like the nerve disconnect/dysfunction first, loose use of muscle, then slowly lead to muscle waste?
Thanks
 

Bestfriends14

Forum Supporter
Senior member
Joined
May 7, 2017
Messages
862
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Yes, you are correct. First is the inability to use a muscle, then, through not using it, atrophy sets in and the muscle wastes away.
 
Status
Not open for further replies.
Top