Terrified it may be ALS - Sudden whole-body muscle weakness a month ago that hasn’t gotten better

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healththro780

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Hi all, just want to preface this by saying I have an EMG scheduled but I just want some reassurance that this could possibly not be ALS, as I’m completely terrified. My doctor also noticed my left thumb was a bit weaker than it was during my last check (yesterday). Also some slightly NSFW content. I have cried almost every day the entire week from just fear, which i’ve never done in my life. All bloodwork is normal

About a month ago i *nsfw* did the deed by myself if you catch my drift while caffeinated. after i finished i noticed my whole body was weak, it was so sudden. just like super shaky after activities, esp my knee and arms. i went to my dr about it and he thought it was a combo of post covid and anxiety. it hasn’t improved

at this point i hadn’t connected the dots that caffeinated deed = pain/weakness, so i did it again about three weeks later (i had done it in between these two times without caffeine with no problem btw). after the second time it seems almost worse in some areas. for instance, both my ring fingers are weaker now and my middle finger on my left hand doesn’t extend all the way without a ton of force/trembling; and the same for my thumb on my right hand. my left hand also couldn’t really hold this one heavy thing upright very well but could fine on my right hand.

the most jarring symptom has been this lip trembling i get when i purse my lips a certain way and sometimes drink. didn’t notice this until after the second time. another one i didn’t notice that’s very nerve racking is that my left middle finger does not bend as far back as it would, it feels like a muscle in my wrist is stopping it, and if i do the 🤟🏻 my hand shakes a ton like my ring fingers are too weak for it, and they used to not do this. it also feels like my feet and hands fall asleep a lot faster

initially just chalked it up to being right handed but after noticing the finger things i am just convinced i have ALS. i’ve also had muscle twitches all over my body after i use a muscle

is there any way this isn’t ALS? i’d really appreciate some reassurance, i am terrified. i just hope this is all somehow long covid.

the few things that have eased my mind: no trouble swallowing or talking; it presented in my whole body instead of just like one body part, i can still move everything in my body (like i can do push-ups and everything), im only 23, and that’s about it lol. i understand y’all aren’t doctors and the only way to get tested is an EMG but any reassurance that this may not be ALS while i’m waiting on it would be much appreciated

some more things i forgot to note:

my neuro did a similar but less thorough strength test (he didn’t do the same thumb test as pcp) and said i was “as strong as a horse” and didn’t “see anything that would indicate a serious neurological issue”, just a tremor, but it also felt like he wanted me out of his office fast and i didn’t get to tell him all my weakness

my PCP also said he almost guarantees it’s not ALS but i still can’t get over the thumb weakness
 

Nikki J

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I would have to agree with your pcp but would put it more strongly. It doesn’t sound remotely like any ALS I ever heard. The neurologist could probably tell just by looking at you that it isn’t going to be anything serious. They pick up things just by talking to you before they even start the exam.
if you had covid it can cause some strange issues Please read the post on it at the top of the subforum
please let us know after you have emg results but don’t worry in the meantime.
 

healththro780

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Thank you for replying, any bit of reassurance helps. I just can’t get over the fact that I have like true clinical weakness in my thumb, the only thing keeping me going was that a month ago my doctor said i didn’t have any true weakness. The numbers in the sticky as far as the odds of getting it make me feel better but i still just feel so scared, i wish i could turn my brain off
 

Bestfriends14

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One does not start with ALS in one's thumb. What would make you think you have ALS because of your thumb?? Everyone at some point in their life has periodic weakness, whether it be from poor diet, poor hydration, or stress. Everyone. So, does this mean that 100% of the world has ALS? No, it does not. Please, get help if you cannot shut your brain off. Put this forum to rest and go live your life.
 
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Clearwater AL

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I agree with Nikki, a Neurologist is very observant the whole time you are in the office with him/her.
It's many things I won't list here but just a few, how you get up and off the examining table, sit in the
chair, they have many ( I'll call the secrets of observation). So many posters have said the Neuro
seem to blow them off. Well, they are highly trained and highly educated and part of both is
observation of the patient... the patient 99% of the is not both. They feel they got blown off... good
Neuros see no sense of further expensive testing doing the patient a favor and actually turning
down profitable testing for him/her or the facility they practice within. Yes, there are other Neuros
who'll go for the money with patient persistence.

My opinion... you need more help with Health Anxiety than anything related to ALS.
 

MupstateNY

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Needing reassurance can be like a mosquito bite that never stops itching for more than a minute. However, I am glad to give you reassurance, if you think that will help you relax.

I do, however, have a couple of things to say about thumb weakness. I have ALS. My first symptom was thumb weakness. I knew nothing about ALS, but dutifully went to get an EMG when ordered by my doctor. It took a couple months to get in for the EMG, and another five months to get diagnosed. My point is that if you are told by a neurologist that you might have early ALS, you get to live with the uncertainty for a long time. It's actually not a bad exercise in patience, and tolerating uncertainty.

The other thing I would like to say about thumb weakness is that once the EMG revealed that I had ulnar nerve entrapment, and I was encouraged to get that fixed surgically, I went to see a hand surgeon, and she asked me to do some hand exercises with "thinking putty" as preparation for the surgery, and she asked me to sleep with the affected arm straight. (You can wrap a towel around the arm to avoid bending by accident while asleep.)

I bet you've heard of carpal tunnel. Well, ulnar nerve entrapment is kind of similar, only at the level of the elbow, and the surgery to resolve it is straightforward.

I like Crazy Aaron's putty, available at Target.

If you decide to do some strengthening exercises, while you're waiting for your EMG, please do not OVERDO the exercises. Ten minutes a day is plenty. You can squeeze the putty between thumb and forefinger. You can bury washers, buttons or coins in the putty and then dig them out. Which I find to be a fun activity in and of itself.

Most importantly: I agree that the chances you have ALS are SMALLER THAN MINISCULE.
 
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