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KristiRinTX

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Learn about ALS
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Tx
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Hi all,

I’ve been lurking for a while but have been hesitant to post because I don’t want to upset anyone by jumping the gun.

I’ll try and make this short but I just need some insight into what I’m experiencing. It started with twitching that I noticed going on two months ago. The twitches were all over, calves, thighs, arms, eyelid, back, stomach, foot but majority of them were on the right side.

I am also experiencing muscle fatigue on my right side in my thigh and arm as if my limbs are just heavy and clumsy or something. Also a burning/tightness especially after a lot of use, first was in my right thigh but has subsided and now is in my right arm and shoulder. I still feel like my strength is there, just harder to use on my right side.

I’ve also noticed that my voice seems more hoarse and deeper than usual and I’m always clearing my throat now, though my husband says he hasn’t noticed my voice change except for occasionally like at night but not consistently.

Went and seen my PCP about two weeks into it and he ran a whole bunch of blood tests really only showing I was vitamin D deficient. Made an appointment with neurologist and first seen her on (3-29) where she did a clinical exam and said she didn’t note any weakness. She scheduled me for an EMG/Nerve conduction on my right leg and arm the next week (4-4) where she noted that three areas of my leg came back abnormal as well as my right tricep. Nerve conduction was normal. (I will post EMG results)

I was sent for MRI which came back as showing no disc or nerve problems.

So now she wants to see me back in 3 months and perform another EMG in 6 months. She didn’t really give me any insight as to why the abnormalities in my EMG occurred and now I’m basically in limbo having to wait.

I’ve called around to try to get into a neuromuscular doctor for a second opinion but they are all booked until July/August. Had the EMG come back clean I probably wouldn’t be so worried about it but I’ve been consumed with fear since then and she didn’t really put my mind at ease.

So i guess my questions are: 1) is the EMG results consistent with ALS?

2)If the EMG showed abnormalities in that many muscles, would I have noticeable weakness by now or is it too early?

3)It seems the muscle fatigue I’m experiencing are also the places the abnormal results of EMG occurred as well. Would muscle fatigue precede the muscle weakness?

4)As far as the hoarseness, would that be something that would be a slight change or a change so much that other people notice it?

Sorry for all the questions, I’m just at a loss. Thanks in advance for any replies.
 

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You mention twitching, burning, tightness, perceived weakness, but say your strength was normal on neurological exam. Also no real muscle function failure (like slurred speech noticed by others, inability to stand on heels or toes, inability to fasten buttons or sign your name). So clinically, your history and reported physical exam do not suggest ALS.

Your EMG would not be consistent with ALS either without the positive sharp waves, increased insertional activity, fasciculations, or fibrillations. Usually people with ALS have more widespread evidence of denervation and reinnervation.

Your doctor probably wants a follow up EMG to track the few abnormalities that showed up. She is being a thorough careful doctor, and those are qualities to be valued. EMGs can show abnormalities for a variety of reasons other than ALS.

Bottom line: I would not be worried about ALS here.
 
Thank you for the quick response Karen. I think it just shocked me when my EMG came back abnormal because I was expecting to go in and everything look clean so of course my anxiety heightened after that. I also didn’t really understand how to read the EMG and she didn’t go into detail as to what she saw. I know it says in the findings : “all other tested muscles showed normal insertion all activity, no abnormal spontaneous activity, normal motor unit morphology, and normal recruitment pattern” so does that mean she did note some of those issues with the abnormal muscles? Positive sharp waves and and all that kind of talk goes over my head a little.

I don’t seem to be having any of the issues you have listed, my right leg and arm just feel really tired and heavy and will begin to burn a little when I use them a lot as well as they get really shaky. I don’t mean to reiterate from my last post but I guess my fear is that the muscle fatigue is preceding the muscle weakness? Is that even how ALS presents? I’ve been dealing with all of this for going on two months, would clinical weakness have appeared by now?

I would really appreciate your insight to these last couple questions and sorry to be a bother.
 
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