Does it looks like ALS?

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JohnWachinzjy

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Hello.
I'm 27/m.
First of all thanks for all members of this forum for all the good things you do on this platform.

2 months ago I started to feel my tongue is a bit off. And had trouble swallowing(mainly saliva and liquids, they seems like stuck at the back of my throat). Apart from that I had a lot of fasiculations all over the place but mainly in my upper lip, legs and some in arms.They are not constant but upper lip one usually starts when i brush my teeth or when I actively use it. Overall my muscles are easily fatigued. Especially jaw and tights(maybe because i use this two muscles often).

Apart from that I have mild weakness in my right arm and my foot. Mostly in my ring and pinky fingers.

But i can still do everything.

When I went to neurologist she stated that my power is fine and I don't seem to be ALS patient yet, and sent me to EMG/MRI.

Blood work showed CK levels of 65(which is not even close to upper bond). Other than that everything was fine.
Neck MRI show some disk bulge in C5-C6 and C6-C7.
EMG was done only on my arms(no bulbar muscles, 5 muscles tested(4 on right side, 2 on left, including both deltoids)) and conclusion is:(its my translation so sorry if i mistake some grammar)

"
F-waves on left and right side have increased percentage of blocks.
M-responses are normal.
According to needle EMG no spontanious denervation activity has been recorded in observed muscles.
No fasciculations are observed in muscles tested during EMG.
In all muscles tested registered MUPs with decreased amplitude and decreased duration.

Conclusion: Results suggest chronic C8 nerve root affection on the right side.
"

Neurologist who performed EMG wasnt that worried.
When I went to my doctor she said that without clinical symptoms of ALS my EMG shouldnt be worrying. And did some quick test of my muscles all of which was pretty fine. And sent me to do some additional blood work.

My symptoms still persists, so I want to ask advice on should I seek the second opinion, or just continue to work with my doctor. Mainly Im worried they didnt test bulbar muscles, however deltoids were tested. And its as close as they were to the bulbar area.

And the second question is does my EMG results have abnormalities related to ALS?

Thanks, I appreciate your opinion and really thankful for that opportunity to ask.
 

lgelb

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The EMG and your symptoms suggest damage to the nerves in your spine that control your arms, and possibly primary muscle damage (myopathy), though that would be more clear from a full report. But from what you have written there is no suggestion of the kind of nerve damage that ALS causes.

Nothing you report makes us suspicious for ALS. The changes in ALS that would mean bulbar onset would also show up in limbs, so it's all right that bulbar muscles weren't tested.

I would ask for a formal diagnosis and if physiotherapy could help.
 

JohnWachinzjy

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Wow. This is actually what EMG says, I just didnt translate it because of word possible in it.

It says: Results suggest chronic C8 nerve root affection on the right side, with possible primary muscle damage.

Thanks so much for information.
I already have formal diagnosis: Degenerative spinal changes with muscle-tonic syndrome.

But my doctor is basically saying that with normal CK levels, she dont think I should pursue neurology at all. And she sending me to endocrynologist for thyroid ultrasound. But Im just not sure if thyroid can cause something that can be somehow visible on EMG or such a weakness.

Im not dismissing my doctor in anyway, but just wanted to ask knowledgeable members of this forum if I should probably seek second opinion cause my doctor is not ALS specialist.

Again thanks, with support of your precious opinion, and that its almost goes the same way my doctor thinks, I will work with my doctor on the next steps.

Thank you so much and sorry for taking your time.
 

lgelb

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It is always worth getting a second opinion when something is possibly treatable, as inflammatory myopathies are. CK isn't 100% reliable for that kind of diagnosis -- there are multiple signs and tests.

If you may have a lump in your thyroid gland, that is certainly a good thing to know as it is very important and treatable. So you could find that out and still go back for a second neurology opinion.

The good news is, ALS is not in this picture.
 
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