Please help!!. Could this be ALS

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Andrewfung28

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Hi, I’m a 50 year old male and I am very worried about some symptoms that I’m having. In August of last year I noticed that my voice was a little hoarse. I attributed it to a cold I felt I was having and didn’t think about it for awhile. About April of this year, realized that it was still there, so I made an appt with an ENT. He diagnosed me with laryngeal muscle muscle tension disorder and recommended that I see a speech therapist. The only appt I was able to get, however, is not until next week. My symptoms has since gotten worse though. It’s so bad that I don’t like to talk anymore.

I must backtrack a little though. At the time that I noticed that I was still hoarse in April, I googled my symptoms and ALS popped up as one of the possible cause. Like an idiot I dove into into reading up a lot more on it as well as watching YouTube videos. Not long after that, I started having twitches in my right leg. That’s has since spread to pretty much my entire body. I have also lost about 20 pounds since then. I have been to a Neurologist and done an EMG on my limbs. Thankfully, that was clean.

I read the guidelines for posting and if I’m violating, please accept my apologies. What’s scaring me is the worsening hoarseness and I also feel like my swallowing is off. I haven’t been to work in 3 months because of my constant worrying. I can’t sleep- which I forgot to mention- like I used to before. I will wake up multiple times through the night. I would fall asleep and be up 5 mins later. I’ve also been crying a lot, which is not normal for me. My tongue seems like it has gotten smaller. I haven’t seen any twitching of it when it’s resting in my mouth though. In my opinion, it has atrophied.

Sorry for such a long and rambling post, but I’m begging for some insight. Very scared this might be ALS. Specifically Bulbar or Respiratory onset because of the voice and sleeping issues. Thanks in advance for any response.
 
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Nikki J

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What did your neurologist say about your voice and other perceived bulbar issues? Why did they emg your limbs and not do a bulbar screen site if you were only having limb twitches but more symptoms in the bulbar area ? That seems backwards
 

Andrewfung28

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Thanks for responding. At the time of my EMG, my hoarseness wasn’t really that noticeable. No it’s very obvious. Also most of the Bulbar issues started afterwards. I did mention the few I had to him though. He asked me to stick out my tongue, move it around, and used a tongue depressor to test the strength of it I guess. He said it was fine at the time.
 

Nikki J

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It sounds like you should revisit the neuro then and have them reassess you
 

Andrewfung28

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Thanks. I definitely will. Do you think I should be overly concerned though?. I mean, I’m not slurring my words or having swallowing problems. At least not yet. Also, do I need another EMG?.
 

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A hoarse voice, due to ALS, is because you are not breathing out well enough to speak well. That does not sound anything like what is happening with you as you would have other far more concerning issues, not a hoarse voice.

Bulbar symptoms involve the tongue and cause slurred speech and swallowing issues.

Please do see the same neurologist again as they can compare your previous exam to a new one and give you far more valuable information than we can by text. Only that neurologist can say if you need another EMG, but you aren't showing any symptoms that would seem to indicate this as you don't have failures happening.

Let us know how that goes.
 

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Another EMG is a question for the neuro, but being emotional and losing weight could speak to a lack of refreshing sleep, and your anxiety about all this. It's hard to accurately assess your issues when you are keyed up and not at your best. So I would really try to figure out the sleep thing as you go through the diagnostic process, and ask about a sleep study to make sure you are breathing normally during sleep, but I don't think you have anything like ALS.
 

Andrewfung28

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Ok. Thank you for the advice. I will be sure to update after my next visit.
 

Andrewfung28

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Hey. I pray everyone is having a good day. Just an update on my situation. I had another EMG done today on my left leg and arm( I previously had one on my right) and I was told that I had “ no signs of any motor neuron disease. Needlessly to say, I’m grateful for that. However, “rare fasciculations” were detected and deemed to be benign. Not sure if I agree that they are rare because they happen very often to me. There was also low Amplitude detected in the right peroneal CMAP. That was also detected on the first EMG. That one didn’t have any fasciculations though. Still having the sleeping issues and a hoarse voice. Both ENT and Speech Pathologist said they didn’t see any signs of anything sinister. They both agreed that it’s muscle tension dysphonia. Basically, I just wanted to give an update. I’m grateful, as I stated earlier, but still a little anxious. I’m gonna continue to pray for all of us. Thanks again for the allowing me to post my situation on this page.
 

Clearwater AL

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Andrew, a short reply, great news... you're good to go from this forum.
 

Andrewfung28

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lgelb

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The frequency of fasciculations that you feel is not the same as "rare" on the test. You do not have to worry that they missed something. As others have said, you can stop worrying about ALS and focus on the activities that help you feel less anxious.
 

Andrewfung28

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Thanks for the explanation. Truly appreciate it. Definitely gonna take that advice and deal with my anxiety. Much respect.
 
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