Lost mom to ALS in April, now worried about possible symptoms

[Teamsunflower]

Hi,

First, all my love to those with ALS and their caregivers. I’ve witnessed ALS very personally as my mother just passed from it. I know the trials you endure and I’m dedicated to fighting for clinical trials and funding for ALS research.

Having watched my mom, now I’m worried sick about it. I have read the rules of this forum, but I couldn’t seem to find a situation similar to mine as I looked through other threads.

My wrist and forearm feel weak. I’ve read that with ALS you simply lose the ability to do things, however it seems like my mom noticed things progressively happening. I have not lost the ability to do anything, but I feel strain and my wrist does shake when I lift my hand (like a waving hi, for example). It just feels weak and almost numb, and I noticed It affected writing a bit.

If you have any thoughts, will you let me know? My mom held a lot of it in to not worry us, so all I saw was the suffering but didn’t get a lot of info on her end.
Thanks sharing you expertise with me.

 

[Nikki J]

Hi
very sorry about your mom.
fear of ALS among family members - even spouses who are biologically unrelated- is extremely common. We often see worried relatives here.

ALS progression is really about tiny failures that spread to other muscles so it looks like and somewhat is gradual weakening but it is one individual muscle losing strength. It is hard to explain and I don’t think anyone who isn’t a PALS can fully appreciate what it is like. I am FALS and I didn’t fully get it until it happened to me

go to your doctor and get examined. For what it is worth I don’t feel weak but I can’t do things and I am clinically weak

 

[lgelb]

What you describe is most likely not ALS, but Nikki is right -- get it checked out and you will feel better. You've probably been through a rough period physically and mentally, and there is a point where your body sometimes amps up or slows down to get your attention.

I'm very sorry about your mom. Feel free to post a memorial thread for her.

Best,
Laurie

 

[Teamsunflower]

Thank you so much. I appreciate your feedback very much.

 

[Teamsunflower]

Thanks so much for your reply and sharing this info with me. I go to the neurologist tomorrow. I can’t wait until we have a breakthrough at ending this terrible disease. In the meantime, thanks for all you’re doing to help.

 

[Teamsunflower]

Hi, just wanted to ask a quick follow up question: when I went to the neurologist, it was because I felt my wrist was getting weaker. In the meantime, I’ve had rippling twitches all over my calves. They want to EMG my arm only; in your opinion, should I wait and schedule an appointment where they do my calves as well? Or should they only emg weakness?
Thanks in advance

 

[Nikki J]

twitching as you know is meaningless without other symptoms If you have an area of weakness and that is emgd then that should show if your weakness is ALS. If it is not then you should be reassured. If heaven forbid they find anything worrisome they would likely expand the emg or at least arrange follow up

 

[Teamsunflower]

Thank you so much.