Id appreciate people’s opinion.

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Declan96

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Dec 16, 2019
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Learn about ALS
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UK
State
LL
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Rhyl
Hi

I’m currently 23 years old and I am an offshore electrical engineer. Around may of this year I began getting twitching in my feet that caused my large toe to curl and move on it’s own. Later my thumb started to do the same thing. Around a week after noticing this I would notice a persistent weakness in my legs. They just felt weak, it’s hard to describe, and over the course of a couple of months they’d struggle to be able do things like squat or climb the stairs without getting tired really easily.

Around a month after I first noticed all this the twitches they would manifest all over my body. So my arms, neck, face, legs, lower back... pretty much everywhere. I experience very sudden lower back pain aswell as in other areas too like my shoulders. As i have seen and read other forum posts this has clearly made me anxious and like others made me hyper vigilant. In terms of muscle atrophy I’m not sure. Although I’ve not trained in around 4 months now my calf’s seem to look really defined however they have never looked like this before. They look smaller but like I said are still defined. The thing I notice the most however are the areas between my toes and hands, whether it’s fat or muscle they just look to be getting skinnier however I’d say my grip strength is pretty much the same.

I’ve had several blood test and I’m hoping to see a neurologist just after Christmas for the second time as they all came back normal. Although bitten by tics in April they have ruled out Lyme disease as neuro symptoms don’t occur this quickly.

Your thoughts and time are much appreciated. Thank you
 
Please read this if you have not already done so:

Your issues sound mechanical. They don’t sound like ALS at all. Pain and “feeling weak” point away from ALS. Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. The neurologist should reassure you. You would probably benefit from working with a physiotherapist. Meanwhile make sure you stay well hydrated.
 
I totally understand, thank you for your reply I really do appreciate it. It’s just the twitching is so random, some times it’s tiny and barely noticeable and others it’s a single twitch with the entire muscle. Sometimes painful. The weakness is probably the worst thing though.. when i climb a lot of stairs they feel numb and jelly like. A lot of numbness. Do you think it’s worth me getting any tests done.
Thank you again. I really do appreciate the help as worry has taken over at the moment.
 
just go see a doctor, get examined and see what the next step is :)
 
Anything to worry about ? I will thanks ☺️
 
twitching means nothing, please see a doctor rather than random strangers with a terminal illness. thanks
 
Hi I’ve recently had an EMG done to which he told me there could be nerve damage. However he also said it showed as if it was trying to repair itself. I’m still having fasiculations all over my body and especially my back which is causing pain. Safe to say I’m quite worried now. I’ll happily post his findings over when I receive a copy of the letter sent to my neurologist. Any thoughts would be appreciated.
 
We can’t comment intelligently without more detail, preferably the actual emg report with the summary ( deidentified of course) your neurologist should explain in detail what it showed and what it means in your situation
 
These were my results. I would really be grateful if someone could explain them for me. Thank you !
 
Well the summary seems to say it all it doesn’t look at all like ALS. What it shows is your body is recovering from something. Your doctor says it is likely recovering from a tick bite. Is this not what he said to you?

i had to delete the pictures for own good because you did not remove your name. You may repost after doing so if you want to but you are good to go
 
Thanks for your time and I didn’t realise I left my name. He mentioned it could be recovering from a tic bite because it was around the time I started feeling off but wasn’t sure. I mean these symptoms have been here now since last December. I have noticed shuttle physical changes like loss of mass in both hands and feet but it feels widespread. Hopefully he’s right. Fingers crossed.

thanks again !
 
I am sorry you are feeling the worry and anxiety that comes to us all when we know something is wrong. I truly am sorry for your fears and frustration. I remember thinking I had carpal tunnel syndrome, or a pinched nerve. I was as surprised as anyone could ever be when my Dr said ALS. I didn't even know what it was. That is why I am totally surprised by you, and those like you that gravitate to the absolute worst possible outcome. How do you know to even ask? Why ask us? We are here supporting each other in various ways. Nikki and Karen keep encouraging us through science. So many others through prayer, still others through positive feedback. Some through humor. We are holding each other up in the ocean while the sharks are circling. Please take comfort I think you have very treatable Lyme's disease.
 
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