Questions regarding ALS

[Runner39]

My symptoms started in March of last year. I experienced an all of a sudden left side weakness and a few weeks later right side weakness. Had a battery of tests and they found nothing wrong. I noticed a twitch in late March that lead me to google bringing up ALS. After I researched I panicked and twitching spread everywhere. Saw a Neurologist ran me through very brief clinical said I was fine. I mentioned ALS and he said see a shrink.

My perceived weakness has come and gone over last 10 months. I still twitch all over not as bad as in the beginning although some days more than not.

Why am I here? In December my left hand on the side of my palm under my pinky started twitching really bad. I have had hotspots in past but this one I could see clearly and I panicked. 4 days later it went away. But since then my left hand has been feeling off. It doesn't hurt at all just doesn't feel right. If I move my left pinky to the side and the skin of palm comes in and I can make it twitch a couple of times. This scares me.

My questions are does ALS start this way? Does it start with an off feeling then progress to failure?

I have read about so many runners that have been diagnosed with ALS. Would it be smart to just stop running?

I had a physical recently and my reflexes were normal. I mentioned twitching to regular pcp there and he said it is possible that my nervous system is hyperexcited or something like that and that if I don't reduce stress/anxiety twitching may go on for rest of life.

 

[affected]

No hon your neurologist told you clearly you need mental health assistance.
Did you take that advice?

I'm so happy to tell you that you have zero ALS symptoms.

Go get help with your anxiety, it must be so scary.

 

[Atsugi]

Keep running.

Don't sweat the twitches. If your doctor isn't concerned about them, just consider them amusing.

 

[Runner39]

Affected- Yes I have been seeing a therapist for the last 8 months. I am on Anxiety medication. I will admit that my ALS fear has consumed me. My wife ask for a divorce last month but we are trying to work it out.

Atsugi- I want to keep running so bad. I dropped out Houston Marathon because of stories I read about people running marathons and developing ALS. I don't know if running/vigorous exercise like I do dramatically increases my chances.

I was doing so well until last month when left hand start feeling weird and this twitch there that i can make happen on my own. From my pinky straight down to bottom of palm just feels weird. I feel like my strength is still there. But at times feels hollow.

Just not sure how progression works.

 

[Atsugi]

Runner, you didn't describe ALS. Your doctors didn't see ALS. I don't know any reason to think you might possibly have ALS.

You're clear.

You've got a big, life-changing problem, however. Might want to see a psychiatrist as well as your therapist. A psychiatrist is an MD experienced in both physical health and mental health, and can prescribe medications.

Good luck. Time to go. You don't need to know anything about ALS.

 

[Runner39]

I appreciate the help. This last week I have now experienced pains in my shoulders, biceps and forearms. I don't know if they are cramps or not. They are short bouts of pain but more worrisome then painful. The twitching is becoming more frequent in my arms not. It comes and goes throughout the day. A couple of pops here and there.

I have seen a Neurologist but that was back in May and it's been ten months of neuro symptoms and twitching but they never diagnosed me with anything after many tests including MRIs, ct scans, lumbar puncture and countless blood tests. Had one brief clinical but that was in May.

I honestly thought after 10 months of twitching and symptoms but no clinical weakness that I was okay but these little cramps are worrying that this clinical weakness is coming soon.

I have had a sore throat and cough this past week but I have never had little pains like this on the last 10 months.

 

[Atsugi]

Like I said, you're clear. There's no reason to believe you have ALS.

You should really go see a good doctor you trust and get this out of your system.

 

[Runner39]

Thanks Mike,

I guess the only last thing that bugs me is the finger spread test. I ask a physical therapist to do that to me last week and I notice that my pinkies move inward pretty easy I don't seem to have a ton of strength there.

But I can do everything I have always do in the past. I don't drop things, can button things, zip things.

Mike would my pinkies not being strong be clinical weakness?

 

[GregK]

The horse is dead, Runner, quit beating it.

Two knowledgeable CALS said it does not sound like ALS.
The answer won't change because of your pinkie, or a divot in your leg or a twitch.

Move on: you don't belong here. Lucky you.