Questions on ALS Effects

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CameronT

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Hello,

First thank you for taking the time to read my post and educate myself.

First, this isn’t a post for you all to reassure myself for anything because I’m well aware I have health anxiety.

My reason is due to my own health scare with ALS currently. Yet, the more I read into and learned about ALS and being symptomatic the more curious on being educated I become.

Around a month ago I felt a certain “oddness” in my finger on my left hand that I couldn’t ignore. Yet, did because I understand “feeling” is different than clinical weakness. That followed by a lot of arm twitching that were slight but visible if you pulled the skin tight enough to notice them. From there my twitches were dominate in my two elbows and legs, even my feet and hands. Obviously I did the incorrect thing and googled for symptoms. Advice to anyone else reading this, never do it. It’s not worth it if you struggle from health anxiety. From there I noticed my arms primarily feel soreness and tight all the time, twitching that jolts here and there. Feels like two months is the never ending story of twitching in my body.

Again, this is not for you to tell me I’m okay. Yet, as I tried to educate myself on the effects and learn about the stories of people effected I became confused.

Here are my questions;
1. I’ve learned that ALS twitching is less concerning because it’s usually a side symptom of weakness and the nerves in your body trying to revive themselves as it dies. Yet, I read a few people advising that twitching was the only symptom before their diagnosis. After their twitching then they slowly they had clinical weakness. Does twitching usually happen to certain areas or all over?

2. The progression and effect always confused myself, people’s story’s can have gaps in time from when the post. Does ALS rapidly impact your body after noticing the symptoms or do some people take awhile to feel the impacts of what’s happening?

3. I know the odds are apparently slim for younger people, yet I feel the stories I hear online through social media and YouTube videos of personal journeys are 20s-30s in range. Do we think more youth is impact than statistics show, or maybe not!?

4. How do we educate ourselves on something so invasive and yet difficult to diagnose. Where do you all feel is best ways to educate yourself on ALS and how do we inform others to speak and challenge studies for ways to support those impacted by ALS?

I found myself worried at first and now inquisitive to learn more and be educated on those impacted. Yes, I’m still worried that eventually my twitches and soreness will cause clinical weakness, but I’m trying to remember the facts and odds of this horrible disease.

I hope these questions aren’t silly, I’m just confused on ALS. I’ve heard of this disease and it’s unfortunate more people, like myself aren’t educated fully on those impacted by this.

I apologize if this has been discussed before and I didn’t see the information before posting. I’ve read of the health scares people have, but I sometimes that just raised more questions to be educated.

Thank you again,
Cameron.
 

Bestfriends14

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Have a read here:


This will answer all your questions.

Take good care.
 

affected

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In case you weren't sure even after BestFriends post and didn't click it, this link is our official position and we don't move from it.
This answers every question, and I'm sure you will find it really so much more helpful than scaring yourself with stories told by people who never get diagnosed. All the very best, you certainly don't have ALS symptoms.
Please remember too that this community is for terminally ill people and we created this post so that energy doesn't have to be put into saying these things over and over. Live long!
 

CameronT

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Yes,
Thank you for pointing myself to that link.
It’s very informative and the writer to a lot of time and effort for others which is amazing.
Thank you both for taking time to review my conversation. I’m not extremely worried for myself, but I definitely I’m glad you’re all here to help each other and help educate others.
Much love and support!
 
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