ALS fear.. again.

[cbhaga01 29]

Hi everyone.

Back around Christmas, I started to notice a tight sensation in the fat part below my thumb. No weakness, trembling, or loss of motion. Just, tight and "off". My other fingers all feel fine.

I've been able to function almost entirely normal. The only thing I'm noticing is that when I spend a significant amount of time playing video games or guitar, I will have quite a bit of dull pain running through that part of my hand and down my wrist afterwards. It would probably also be beneficial to mention that all of this started after I had spent several days gaming way more than usual.

It also started right around the time my dad passed from cirrhosis. So, stressed already? Hell yes.

It's been a month now. I don't feel like it's gotten better, though there are better days than some. But it definitely hasn't gotten worse either.

In my lizard brain, though, I have thoroughly convinced myself that it is something neurological and it's only a matter of time before my whole body starts to shut down. First it was Parkinson's, now ALS.

Help?

[sTeaLth 236]

Sounds something like carpal tunnel. I used to game a lot and I often had weird pains in my hands and shoulders from it. Just fyi, that’s sounds nothing like what you fear. 

[cbhaga01 29]

5 hours ago, sTeaLth said:

Sounds something like carpal tunnel. I used to game a lot and I often had weird pains in my hands and shoulders from it. Just fyi, that’s sounds nothing like what you fear. 

Thanks. I honestly hadn't considered CT. The logical part of my brain suggested "gamer's thumb", but the descriptions of that I've encountered online make it sound way worse than what I'm dealing with.

[Holls 1505]

23 hours ago, cbhaga01 said:

Hi everyone.

Back around Christmas, I started to notice a tight sensation in the fat part below my thumb. No weakness, trembling, or loss of motion. Just, tight and "off". My other fingers all feel fine.

I've been able to function almost entirely normal. The only thing I'm noticing is that when I spend a significant amount of time playing video games or guitar, I will have quite a bit of dull pain running through that part of my hand and down my wrist afterwards. It would probably also be beneficial to mention that all of this started after I had spent several days gaming way more than usual.

It also started right around the time my dad passed from cirrhosis. So, stressed already? Hell yes.

It's been a month now. I don't feel like it's gotten better, though there are better days than some. But it definitely hasn't gotten worse either.

In my lizard brain, though, I have thoroughly convinced myself that it is something neurological and it's only a matter of time before my whole body starts to shut down. First it was Parkinson's, now ALS.

Help?

Im sorry you lost your dad. Mine passed in July. Big hugs. 

I was an ALS worrier so unfortunately, I know way more than I should. Pain and feeling off is not a symptom. That's actually the exact opposite. They have failure with no feeling. You can still do all of your normal activities even if you have moments of pain or feeling weakness and feelings off it's not a symptom. It's absolutely not Als. People with als would tell you to get it out of your mind and live your life. Als worry can be a rabbit hole that can steal your time and happiness..don't let that happen. 

[cbhaga01 29]

Hi holls. I am so sorry to hear about your dad. How are you doing with everything?

[Holls 1505]

1 hour ago, cbhaga01 said:

Hi holls. I am so sorry to hear about your dad. How are you doing with everything?

Honestly, not well. I'm 44, I'm incredibly lucky and happy I had so many years with him but it's never enough. He was my hero and I miss him daily. My anxiety is through the roof. I was just on tik Tok and every post was about someone with cancer it freaks me out. My dad passed from a UTI that made him septic and fungal pneumonia very odd things. He was my opposite, he lived in the now and never ever worried. I wish I could do that. I want to run to the e.r and do a CT scan just so I know everything is fine lol. I've thought about paying out of pocket for those MRI full body scans but I've read that sometimes that leads to unnecessary worry and testing down the line. I expected this uptick in anxiety but it really sucks. 

 

How are you? Has your anxiety worsened since your dad's passing? 

[cbhaga01 29]

27 minutes ago, Holls said:

Honestly, not well. I'm 44, I'm incredibly lucky and happy I had so many years with him but it's never enough. He was my hero and I miss him daily. My anxiety is through the roof. I was just on tik Tok and every post was about someone with cancer it freaks me out. My dad passed from a UTI that made him septic and fungal pneumonia very odd things. He was my opposite, he lived in the now and never ever worried. I wish I could do that. I want to run to the e.r and do a CT scan just so I know everything is fine lol. I've thought about paying out of pocket for those MRI full body scans but I've read that sometimes that leads to unnecessary worry and testing down the line. I expected this uptick in anxiety but it really sucks. 

 

How are you? Has your anxiety worsened since your dad's passing? 

He sounds awesome. I hope you're taking care of yourself as best you can.

Things will change eventually. They may not get "better", but your hurt will evolve and you'll learn to carry it with you.Grief doesn't mean you're broken or that you have a problem that needs to be fixed. It's just love in its most raw form.

Tests aren't a terrible idea IF you can walk away content with the results. I've done the MRI thing before and felt that relief when I've been told "all normal, no need to follow up". But paying out of pocket? Geesh, what would that even cost?

My anxiety has been awful for months now. Dad had been sick for several years and it was an ugly decline. He took a real turn for the worse around Thanksgiving and we lost him January 4th. I was there all through the night before, when he was in a coma and his organs were starting to shut down. And then I saw him take his last breaths the next morning. It was fucked up, to be blunt.

I've been spiraling ever since. That, along with whatever is going on with my thumb, cranked my neurodegenerative fears WAY up. I'm in a fairly bad place with depressive symptoms. All I want to do is sleep and eat junk food. I'm terrified to even let myself daydream about the future. But I'm going to therapy and putting in the work. I'll get back to good eventually. At least that's what I'm going to tell myself.

[Holls 1505]

You absolutely will get back to yourself soon. Your future is big and bright! Definitely start making plans. I too at times want to sleep and escape reality.. I have a 20 month old and she is a fireball! she keeps me running all day. Honestly if it wasn't for her I would be in worse shape. I'm doing therapy too.. it's a new therapist so it's slow going. That's good you are in therapy too, it really does help. 

I'm so sorry about your dad. I can't imagine what you went through. That sounds traumatic.. My dad told me he didn't want me or my sisters with him when he passed..he said that was a Private moment and he didn't want us crying over him. We left my brother in law at the hospital and when he stepped out of the room my dad passed. He had his private moment..I regret it and then I don't..I know that's all part of grief. It's like one hell of a rollercoaster. 

I hope you are giving yourself a lot of grace. Sounds like your dad was a great man and y'all were close. I'm sure he's still close by you. Do you ever feel him?.do you feel he leaves you signs? I asked my dad if he would and he said no lol!! He said he would be too busy having fun and he would see me when it was my time. I'm here if you ever want to swap dad stories and vent about it all, just sent me a message. 

Don't worry about your thumb though. It's absolutely fine. 

[cbhaga01 29]

19 hours ago, Holls said:

You absolutely will get back to yourself soon. Your future is big and bright! Definitely start making plans. I too at times want to sleep and escape reality.. I have a 20 month old and she is a fireball! she keeps me running all day. Honestly if it wasn't for her I would be in worse shape. I'm doing therapy too.. it's a new therapist so it's slow going. That's good you are in therapy too, it really does help. 

I'm so sorry about your dad. I can't imagine what you went through. That sounds traumatic.. My dad told me he didn't want me or my sisters with him when he passed..he said that was a Private moment and he didn't want us crying over him. We left my brother in law at the hospital and when he stepped out of the room my dad passed. He had his private moment..I regret it and then I don't..I know that's all part of grief. It's like one hell of a rollercoaster. 

I hope you are giving yourself a lot of grace. Sounds like your dad was a great man and y'all were close. I'm sure he's still close by you. Do you ever feel him?.do you feel he leaves you signs? I asked my dad if he would and he said no lol!! He said he would be too busy having fun and he would see me when it was my time. I'm here if you ever want to swap dad stories and vent about it all, just sent me a message. 

Don't worry about your thumb though. It's absolutely fine. 

He was a complicated man and we had a similarly complicated relationship. He suffered from severe depression and anxiety which he self-medicated with for decades (he died from cirrhosis). I was always kind of kept at arm's length until I was quite a bit older. We still loved each other. We just didn't like each other while I was growing up.

And I can't really say I believe the whole signals thing. I do believe he still here in some capacity. Everywhere, in fact. Like everyone we lose.

My fingers on that same hand have been feeling weird today too. Still not weak, but off. I'm trying to tell myself it's just me being in my head. Interestingly enough, I haven't noticed the thumb all that much at all.