New to ALS rabbit hole and now IÂ’m panicking

Hi all. Over the last week IÂ’ve experienced sudden weakness or heaviness in both of my legs (however I think the right leg is worse). This has quickly progressed to my arms. ItÂ’s really just come out of nowhere. I walk a lot and IÂ’ve never experienced tiring this easily while walking. I feel like a bag of concrete. Just now IÂ’ve gotten up to go to the bathroom and I am off balance and felt like I was going to fall. I do have some dull achiness around my right side hip and base of my spine mainly (though it radiates into the left a bit). Have also experienced some dull cramps, tingling and pins and needles. My buttock area also seems to have a vibrating feeling off an on.

IÂ’ve read the sticky on ALS and I can walk on top toes, heels, hop on one leg, jump, do calf raises. I can get up off the floor from sitting without using my hands but itÂ’s difficult (IÂ’m 41). I know the sticky says ALS is about failure not feeling but IÂ’ve just read so many stories from people who have been diagnosed whose disease started off as some weakness or stiffness then progressed into falling.

I do have some trouble with buttons, tying laces and I have had shaky hands since I was a teenager. My parents often make comments about how awkward I open boxes, hold things. My hands also feel clumsy often.

I do want to add that yesterday my symptoms and weakness didnÂ’t seem as bad as the day before. But today theyÂ’ve felt worse.

I guess I just need some reassurance before I go to the doctor tomorrow. I know my dr will just think IÂ’m anxious and probably brush me off. I feel really panicky tonight after reading all of those ALS stories when I was hoping IÂ’d read something that would convince me that I definitely donÂ’t have it. IÂ’ve never worried about ALS before but this new and sudden feeling of heaviness and fatigue is so scary and the fact that itÂ’s been there for a week now worries me a lot.

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Originally Posted by rhianna_s

Hi all. Over the last week IÂ’ve experienced sudden weakness or heaviness in both of my legs (however I think the right leg is worse). This has quickly progressed to my arms. ItÂ’s really just come out of nowhere. I walk a lot and IÂ’ve never experienced tiring this easily while walking. I feel like a bag of concrete. Just now IÂ’ve gotten up to go to the bathroom and I am off balance and felt like I was going to fall. I do have some dull achiness around my right side hip and base of my spine mainly (though it radiates into the left a bit). Have also experienced some dull cramps, tingling and pins and needles. My buttock area also seems to have a vibrating feeling off an on.

IÂ’ve read the sticky on ALS and I can walk on top toes, heels, hop on one leg, jump, do calf raises. I can get up off the floor from sitting without using my hands but itÂ’s difficult (IÂ’m 41). I know the sticky says ALS is about failure not feeling but I’ve just read so many stories from people who have been diagnosed whose disease started off as some weakness or stiffness then progressed into falling.

I do have some trouble with buttons, tying laces and I have had shaky hands since I was a teenager. My parents often make comments about how awkward I open boxes, hold things. My hands also feel clumsy often.

I do want to add that yesterday my symptoms and weakness didnÂ’t seem as bad as the day before. But today theyÂ’ve felt worse.

I guess I just need some reassurance before I go to the doctor tomorrow. I know my dr will just think IÂ’m anxious and probably brush me off. I feel really panicky tonight after reading all of those ALS stories when I was hoping IÂ’d read something that would convince me that I definitely donÂ’t have it. IÂ’ve never worried about ALS before but this new and sudden feeling of heaviness and fatigue is so scary and the fact that itÂ’s been there for a week now worries me a lot.

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All the reassurance you need is in the bolded text. Add Dr. Google to the mix and here you are.

FMP

Thanks for the reply. But what else could be causing this weakness? IÂ’ve felt like this since the 26th and have never experienced anything like it.

Your doctor will assess you tomorrow but I 100% believe ALS won't be a concern. You said yourself things improved a bit and that doesn't happen with ALS. Then there's this.

FMP

Went to the doctor, he said it’s not neurological because it wouldn’t present in more than one area at a time. Checked my reflexes and they were all normal. He checked my blood pressure and there was a significant drop when I stood up so he said it’s more than likely I have a post viral syndrome. I can’t recall being sick with a virus but he said I could have been asymptomatic. I did have a toenail infection just over a month ago and was on doxycycline which knocked me around quite a bit but that’s the only thing I can think of. We did a full blood count back then and my bloods all came back perfect.

Definitely put my mind at ease about the ALS but I am concerned about my blood pressure dropping. Hopefully this heaviness feeling and fatigue goes away soon though it’s awful.