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WilliamS

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Hey everyone,

It's been a couple months since I've been here, previously I just browsed for information. I've had a downward spiral of symptoms and finally was able to get into a neurologist. I've been trying to keep a positive attitude. Life has been pretty cruel to me and I'd love some support. I've lost a few family members this year and have a very bad attitude about all of this. I am young compared to when those with ALS are typically diagnosed, but my symptoms are serious nonetheless

The nuero did an exam, saw the fasciculations and noted that I was hyper reflexive, and also had a clonus in my right leg. (the one that is feeling weak). I was hoping the appointment would put my mind at ease, but she said this isn't a normal occurrence and suggested an EMG. I've ruled out quite a bit of other diseases.

I originally went in for sudden full body fasiculations, progressively slurred speech (It's very hard to hold a conversation, stumbling over words or just outright unable to say things). Problems with voice and swallowing, Right leg weakness, as in I can't walk around the block without the leg burning as if I overexerted it, other times it just feels almost limp, and spasticity / cramping all over are what I've been experiencing. I have felt an almost burning / tingling sensation in my face from time to time, which I understand could point away from ALS?


This thread described my symptoms to a tee, which is also frightening to me:
https://www.alsforums.com/forum/do-i-have-als-als/8846-sudden-speech-problems.html


Very upset and scared. I really need support, I have no one left.
 
William, your description of symptoms does not seem like ALS to me. It sounds serious, but not like ALS.

First of all, let's go straight to your comment that you have "ruled out quite a bit of other diseases." No, you haven't. You've ruled out a lot of other diseases that YOU know about. Let the professionals guide your health investigations.

Now, as to your symptoms, we can say with confidence that the burning/tingling sensation in your face points AWAY from ALS. That has nothing to do with ALS. If this sensory symptom is related to your problem, then your problem isn't ALS.

Plus, having a lower limb involved at the same time as your tongue is involved sounds weird to me. ALS would pick one or the other. For instance, your leg might become paralyzed first, and the paralysis would run UP your body to eventually include your tongue, or your tongue might become paralyzed first, and the paralysis would run DOWN your body to eventually include your leg. But having a leg AND your tongue involved, both from the beginning--that isn't anything I've ever heard of. I suppose it's possible, but it sounds weird to me.

Body-wide twitching doesn't really point to ALS. Twitching is so common to many things that it is not diagnostic of anything.

Plus, the way you described your tongue problem isn't totally clear to me. Can you look in the mirror and move your tongue around to inspect it?

Maybe it would help if I explain a bit about ALS. ALS is a progressive brain disease that affects the motor nerves in your brain and brain stem. A nerve gets destroyed, so it can't send its corresponding muscle the signal to contract. As a result, that muscle just won't move. It is forevermore limp and useless. There is no feeling involved, no feeling of weakness, burning, exhaustion, tiredness, numbness or anything. It just doesn't move. Then, the disease destroys the next nerve, and the next.

The EMG can have many results. I understand that you would be worried, but I don't think you need to worry about ALS.
 
Thanks a bunch Astugi.

I always thought the progression was more of a downhill slope, which made sense in my mind in terms of my speech slowly getting worse, then twitching, then the leg weakness following that. The tongue, oddly enough, doesn't seem to be the source of the slurring, but rather all other muscles that control my speech, which are difficult to move. As you stated, the burning sensation really throws me off, do those with ALS not really experience that kind of sensory symptom when the nerve stops responding?

Really the desperation for a diagnosis is worse than speculating at this point. Whatever I have continues to progress and my quality of life is suffering, all the while I wait months between each test. I think maybe it's the combination of these symptoms is whats feeding als fear, because yes, BFS is a real thing on its own, Dystharia is a real thing on its own, and weakness can be something simple on its own, but together, it seems logical that there's ONE cause to me, which isn't a good thing when you look at the very few diseases that do that together.

Thank you for your insight. I guess there is nothing I can do but try and hide how bad the symptoms are getting, at least until the EMG. Hopefully you're right, I know there is no way to tell yet, but wish me luck.
 
> experience that kind of sensory symptom when the nerve stops responding?

ALS is a disease specifically of the motor neurons, it leaves the sensory neurons alone. My feet no longer work and I've lost ~50% of hand function but I can feel everything just as I could 'before'.
 
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