Looking for reassurance

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New member
Mar 4, 2024
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Hi everyone,

I’m posting today because this is the only place on the internet that I have actually felt reassured that what I’m experiencing isn’t ALS, but I did have a couple questions. I read the before you post info and just wanted some clarification.

I am 30 year old female, and about a month ago I started having issues with swallowing. It is intermittent so it doesn’t happen every day, and only happens when I go to swallow spit, and not every time. Food and drink aren’t an issue. Went to an ENT and he said I have some irritation in my throat and suggested I could have LPR (a form of acid reflux). I’ve been on medicine for a few days for it but still having the swallow issue.

Today I looked at my tongue at rest and it was shaking a little bit kinda like quivering which made me anxious. I have also been getting full body random twitches which I know isn’t a sign you have ALS but combined with the swallow issue I wanted to paint the full picture. Finally, my dominant hand has felt crampy for about a week, it’s gotten a bit better, but still feeling cramps by the end of the day usually.

I do have a known vitamin D deficiency which I started to take d and magnesium supplements for and I have health anxiety. I do not have any slurred speech, or any muscle weakness.

My main question is:

If it were ALS would the swallow issue be intermittent or would it be a constant every time/every day issue?

I already go to the neurologist for migranes, should I bring this up at my next appointment? I don’t want to waste his time.

Thank you for taking the time to read. This website has really helped soothe my anxiety about this by reading others posts.
You are correct that swallowing isn't an intermittent issue in ALS and there is no reason not to voice your concerns to your neurologist, who can baseline your strength and mobility for you.

Reflux doesn't resolve immediately, and diet can really play a role, so I would give it some time and keep a food diary to find some of your triggers. Of course, sleep and stress play a role as well, so if your health anxiety is not being addressed with counseling, this might be a good time to start.
Thank you very much for responding. I appreciate the reassurance about the intermittent nature of my swallowing issues. I have a GI follow up soon and hope to get answers. Have a great day!
Hi everyone, wanted to post an update.

I went to my neuro and he checked me out. Some things I had noticed between my first post and my neuro appointment was experiencing a severe cramp in right thigh followed by several days of weakness or feeling like my muscle is shaking when standing.

Neuro did an exam. Said tongue looked good and my strength was good. He did note my reflexes were slightly brisk in my knees but told me he does not think at this time that I have ALS. He did however still refer me to the USF ALS clinic for an EMG and exam just to be sure.

How concerned should I be about intermittent swallowing issues, and brisk reflexes bilaterally in legs?

Does weakness ever start at perceived shakiness or is it really just like a light switch?

He said the EMG is just for peace of mind but it got me very scared.
Not much

No shakiness is not clinical weakness. Your neuro said you were strong

Just the idea of an emg scaring you tells me you are unlikely to be reassured even after. Please speak with your pcp about getting help managing your fears
Thanks for the reply Nikki, I appreciate it!

The EMG itself isn’t scaring me but more my neuro thinking I have reason to get one. I do know my anxiety is high and I have started therapy and SSRI to combat.
He TOLD you it was for peace of mind
Yes, his telling you that means he's not worried at all. He would never risk having you sandbagged like that. Talk with your counselor about it -- I'm glad you've taken that step.
Thank you all for your assistance. I want to let you know that it really has helped my anxiety over this and I’ve been finally able to get ALS out of my head for the most part. I’ll return in a few months after the EMG to give some closure to anyone who might be reading this also feeling similar worries.

Thank you again for your time!
Glad you are doing better. Do swing by after the emg that is so helpful
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