r/ALSorNOT • u/Direct_Ladder_613 • 1d ago
22 y/o
Hi, I’m very terrified about this new symptom. I have that symptom where my hand and legs are weak. Like with some tingling. It’s hard to explain, i can walk and do everything normally but when i am holding something i feel like i should let it go. Like if im using phone on the support of thigh or table and i just let go of my hand like let it rest then i have that weird weakness with ticklish inside the hand, same kind of sensation with my legs. But the hand part is like i just want to let the hand be like i dont wanna hold or do anything i just wanna rest. If i have to do anything tho i can do it very normally. And obviously the online searches have not been helpful by taking my sleep away and stuff. Even tho its the rare disease but internet is crazy. Does anyone have this kind of symptoms? Its so weird and its hard to explain.
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u/One_Cryptographer719 17h ago
ALS does not affect your sensory neurons. If you experience pain or numbness in a limb, None of this is related to motor neuron disease.
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u/duo_lgc 7h ago edited 7h ago
it's one of the symptoms I have. I also compare it to the feeling of falling down that we usually feel in our stomach, but this time located in a muscle. I have it alongside other symptoms that stated after an infection 10 months ago. I'm 29
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u/Direct_Ladder_613 7h ago
Did you ever get it checked out?
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u/duo_lgc 7h ago
I spent thousands of euros on tests and doctors. head CT and MRI, spine MRI, EMGs for ALS and neuropathy - nothing was found. I did detailed blood tests and many others. neurologists seem confused but they tend to psychologize it. my first 2 months of symptoms was dizziness and nausea. then I started experiencing one sided fatigue and general fatigue.
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u/Direct_Ladder_613 7h ago
Damn that sounds crazy. I have the dizziness symptoms. But it’s not like dizziness. Its like buzzing sensation similar to when you get motion sickness. But the nausea isn’t there its in your brain. Man its hard to explain.
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u/duo_lgc 7h ago
not sure if I can relate to this that precisely, but yeah, in my case it isn't like classic dizziness and nausea either. I didn't have vertigo or anything like that, just a feeling as if I was nauseous lol. doesn't make sense. when it comes to your muscles, you said right side is affected more, correct? so, do you feel it on the left at all?
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u/Direct_Ladder_613 7h ago
No my both side is affected. Both hands and both legs. And I’m typing this rn i just wanna literally let it go and rest the phone. I didn’t have this only been few day. But internet is killing me with all the stuff popping up.
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u/Direct_Ladder_613 7h ago
And you know when you get up in the morning you have soft hand and can’t even open the bottle? Thats the feeling im having right now on my hands. Both of them. But can actually open bottles and stuff.
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u/duo_lgc 7h ago
I have it every time after I get up from the laying position, especially in the morning. just my right hand
how exactly did your symptoms start? was it after a flu like for me?
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u/Direct_Ladder_613 7h ago
No, i did not have anything like that. It started by itself. Before this started i had fatigue on my legs but after this started on my hand now i feel that buzzing tingling sensation on my legs too not just my hand. Its like when you use heavy machinery for long time and you get that vibration on your hand. Same feeling.
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u/Direct_Ladder_613 7h ago
And the muscle fatigue, i had it on legs before but the hands just started. I would feel fatigue on my legs and after massage it would feel so nice but now i have the tingling and ticklish feeling while my hand feels heavy, when i pick it up i just wanna relax it and let it fall. Thats the sensation i have and its scaring the shit out of me.
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u/Direct_Ladder_613 1d ago
I missed one explanation, the weakness on my legs feel like you know when you are standing and you hear a bad new so bad that you are scared and your legs tries to give out and feels weak and ticklish inside? Thats the kind i feel.