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Hyppo

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So I went to see a neuro and he found nothing in the clinical. No weakness. No funny reflexes (although I thought my knee jerks were a bit on the violent side). No babinski. He said my twitches were most likely benign. He did not want to order an EMG.

I know this is a worn out subject, but I'm really wondering about this weakness thing. It seems to me that pushing against resistance is a very crude way of measuring weakness. Surely weakness can be more subtle than that?

I have this spagetti feel in my arms, wrists and led. I don't slur, but I contantly feel like I'm about to and speaking takes effort – it doesn't come natural. I get tired in the face and jaws and tongue from eating. I have teeth imprints on the sides of my tongue and a slightly deviating uvula (the neuro noticed that, but said it was ok, since the soft palate raised symmetrically. No tongue twitches, though. The jaw keeps cracking and popping. Someone mentioned TMJ ... I have other stuff too, but I'm not gonna bore you with it. It's there in the threads somewhere if you're interested. The neuro basically feels anxiety is behind this. It's pretty hard to accept, but I think maybe I could roll with it if the speaking issue would let up.

I guess my question is, how good should I feel about an unremarkable clinical?
 

suzannj

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Hi -
I would say you should feel good. Especially if this neuro sees / specializes in ALS and MND disorders. To not even think an EMG is warranted seems like a pretty good sign to me! :)

Interestingly enough, I too am undiagnosed, and just posted the other day about the same exact feelings in my face and jaw. All very weird, worrying and frustrating!

Take care,
Suzann
 

Hyppo

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The guy I saw was not specialized in ALS/MND. He'd seen maybe 30–40 patients with ALS.
 

sh18

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So I went to see a neuro and he found nothing in the clinical. No weakness. No funny reflexes (although I thought my knee jerks were a bit on the violent side). No babinski. He said my twitches were most likely benign. He did not want to order an EMG.

I know this is a worn out subject, but I'm really wondering about this weakness thing. It seems to me that pushing against resistance is a very crude way of measuring weakness. Surely weakness can be more subtle than that?

I have this spagetti feel in my arms, wrists and led. I don't slur, but I contantly feel like I'm about to and speaking takes effort – it doesn't come natural. I get tired in the face and jaws and tongue from eating. I have teeth imprints on the sides of my tongue and a slightly deviating uvula (the neuro noticed that, but said it was ok, since the soft palate raised symmetrically. No tongue twitches, though. The jaw keeps cracking and popping. Someone mentioned TMJ ... I have other stuff too, but I'm not gonna bore you with it. It's there in the threads somewhere if you're interested. The neuro basically feels anxiety is behind this. It's pretty hard to accept, but I think maybe I could roll with it if the speaking issue would let up.

I guess my question is, how good should I feel about an unremarkable clinical?

Hyppo, I know exactly what you're going through.

It is funny even: yes, I felt like I "about to slur", but not really slurring. I felt like my jaws would get tired sometimes (from chewing on something hard ;)). I had on and off 'weird cramping sensation' in my chin. I had general fatigue and feeling of weakness in limbs sometimes.

Do you constantly evaluate what you say and how you say it? Do you watch your every move when you walk? Sometimes you think "Yes, the weakness should be objective not just in my head... but what if it is just the beginning of ALS and so I just feel it barely but it is not enough to be noticed by doctor?"

This is all caused by anxiety: can you imagine how confident the doctor should be that you don't have ALS in order to tell you EMG is not required? Imagine if you do: you could get him in big trouble. Doctors in the USA are really concerned about covering their butt from lawsuits.

Once you go over your anxiety I promise you your symptoms will go away and you will understand that half of them are just "normal" occurences such as occasional twitches and half of them are imagined or aggravated by your anxious mind.

Time is on your side: the more you go through this without progressive changes the more likely it is not ALS.
 

BethU

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Hi Hyppo ... Your question "how good should I feel?" My answer is I'd feel great! I'd love it. I'd be doing cartwheels (and probably breaking a hip)!

I don't see that you have a "speaking issue" ... you don't slur your words, and have not mentioned any changes in your voice quality, such as becoming more nasal or higher-pitched. I've never "felt" that I was about to slur my words. I just start speaking "normally" and it comes out unintelligible. You also don't mention swallowing difficulties.

Have you checked out the Benign Fasciculation Syndrome web page? Saying that "anxiety" is behind something doesn't mean it's imaginary ... just that the body often reflects what's going on emotionally. The symptoms of BFS actually seem to be much worse than early ALS, and there is very real suffering. The only difference is that BFS won't kill you. If you haven't already, take a look at the stickies on the "Is This ALS?" section.

Also ... your neuro's having seen 30 or 40 ALS patients is 30 or 40 more than you have seen, right? And 29 or 39 more than I have seen.

Good luck!
 

Hyppo

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I don't live in the US tho ...

But thanks, it's good to know someone has experienced these symptoms and that they've gone away. For me the mouth thing has been going on for more than two months. My girlfriend is really mad at me for shying away from social events.
 

Hyppo

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Beth: I didn't see your post. I hear you about the clinical. I do feel good about it. I guess what I was wondering was how much you can tell from a clinical.

Oh, and I am of course a member of the BFS forums.
 

sh18

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Beth: I didn't see your post. I hear you about the clinical. I do feel good about it. I guess what I was wondering was how much you can tell from a clinical.

Oh, and I am of course a member of the BFS forums.

Yes, I asked my neuro that question: what he told me is this: all ALS diagnoses he made were made by the neurological exam: EMG was for confirmation.

When I asked him what if ALS is just starting and you can't see anything in neurological exam? He said in that case it is likely that I won't see much on EMG anyway.
 
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