Anxiety over atypical ALS onset

[joec22]

Hey everyone. I've visited this forum many times over the past year due to some health issues I've had, and I thought I'd finally post to get your thoughts on a) my specific issues/symptoms, and b) how to process in general the discrepancies between the ALS onset "common knowledge" vs specific stories of those who have been diagnosed that conflict with the mainstream articles on onset.

I'm a 37yo male. About 14 months ago I noticed fasciculations in both lower legs and feet, very noticeable in calves and reproducible when I contract calf muscles. They were, and still are, more active after exercise. This didn't worry me due to the many articles here about benign causes.

Fasciculations "moved" to upper legs, shoulders and have begun in back. These have been sporadic, though when they started in shoulder, they lasted there consistently for a few days then went away. Same for back. Again this was not alarming to me due to lack of other symptoms.

What's beginning to worry me is what seems like a progression of other symptoms. About a month ago I noticed that my hands would become a bit sore/painful and seemingly fatigued very quickly when performing tasks that never bothered me before - chopping vegetables, using my computer mouse, driving. Now I can hardly give my girlfriend a back massage without having to stop due to my hands feeling too tired. I have noticeable pain throughout the day in the base of my thumb (pollicis).

Also about a month ago substantial lower neck pain began and has not subsided. It keeps me up at night, and it's terrible when i first wake up and start the day. It gets better through the day and is best (i.e. barely there) while I'm working out (running or weightlifting). At times over the last month there's a sensation of my neck just feeling "tired." The majority of the pain I can pinpoint to a certain area in the base of my neck.

At times I feel a "buzzing" in a small area on my tongue. It comes and goes. I have started in the last 2 weeks to feel a sensation at the base of my throat that there's a bit of "constriction" or the sensation of "a lump."

I have no noticeable weakness. I lift weights 3 times a week - heavy loads in exercises like bench press, squats, deadlifts, shoulder press, etc. I don't have difficulty in any of these.

I realize that a neurologist would say these symptoms do not readily point to ALS. However, I've read many posts here and elsewhere from those living with ALS that their symptoms started in a "non-typical" fashion: pain in the hands, back pain, abnormal soreness after exercise, muscle "fatigue" instead of weakness. Which leads to my second question/point to discuss.

I realize there is much commonality in ALS progression symptoms, yet at the same time I can't help but thinking there is much that is not understood about ALS progression symptoms. It seems, for example, like there's a shift in thinking that pain is not associated with ALS onset, although I realize it is not completely common. And there are just so many stories of what a neurologist would consider atypical progression.

This last point leaves little room for finding a reprieve from my anxiety about what my symptoms will turn into, even though they might be non-typical of ALS progression. I realize I'm also younger than the typical onset age, though that just makes me feel as though if ALS onset happened at an atypical age, perhaps it would make sense that the symptoms themselves are atypical as well.

I suppose there's no direct question I'm posing here, just a general uncertainly about how to process these symptoms without having them cause a lot of anxiety that creeps into daily life.

Thanks for reading.

 

[Nikki J]

I think perhaps you are turning descriptions of symptoms experienced in the first year or two into first symptoms. But anyway you know it does not sound like it. you should see your doctor and let him/ her evaluate your symptoms. If you need a specialist of whatever kind ( I don't think the recommendation will be neuromuscular) you know there are many outstanding doctors in all the fields in Boston.

 

[Atsugi]

Joe, you're getting ahead of yourself. First you worried about a rare disease, and then you're worried that it's an atypical presentation. All without weakness.

Time to back up and let your GP doctor lead your heath investigation, and don't worry about ALS.

 

[affected]

... how to process in general the discrepancies between the ALS onset "common knowledge" vs specific stories of those who have been diagnosed that conflict with the mainstream articles on onset...

We have a sticky Joe. A lot of time went into writing it. It is our OFFICIAL position. The net is huge, you can read every possible conflicting thing there.

Here we stand by what the sticky says, so if you read it, that's how it is mate.

You are not presenting with a single ALS symptom, so that is great news.

You have been reading here a very long time however which is bad news for your mental health. Please go and talk to your doctor about your irrational health fears because the good news is that it can be treated.

All the best