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New member
Mar 25, 2019
Learn about ALS
Thank you all for taking the time to read my post and I would appreciate any advice or knowledge you can pass on. I have read the "before you post sticky".

So this all started the the 1st week in Dec, I woke up 1 morning and had a persistent twitch in my left thigh. It prob went on 4-5 days before I googled "Thigh Twitching" and up popped about 25 ALS sites. I unfortunately went down the rabbit hole and read the stories, symptoms, watched the youtube videos, etc.

The twitching then went to the arches of my feet and then my calves (persistently). Now i have random twitches all over (back, neck, arms, hands, etc). I went to my PCP on Jan 2nd and she gave me a basic strength test and said its al ldue to anxiety and stress but if I didnt believe her (she could see it on me face) then she'd refer me to a Neuro.

I went to the Neuro on Jan 21st and told him what was going on and be basically laughed at me. Said I was too young (im 34)and in good shape and "didn't look at all like I would have ALS". He did a quick test of my grip and reflexes on my knees and told me he'd due an EMG for my peace of mind. EMG was done 2 days later by another Neuromuscular Dr on my right Thigh, tibia, calf, foot, deltoid, tricep, forarm, hand, Thoracic Paraspinal, and L4 paraspinal. He said No fasciculations were present nor denervation/reinervation changes.

I had made another Neuro appt for 1/28 because of the dismissive nature of the 1st nero. He gave me a full clinical exam and didn't see any weakness and my reflexes were normal.

About a week after I started having some issuse with my mouth/tongue. It 1st started burning on the sides and across the top of it. It also felt swollen and thick and I thought my speech has been effected. Its still persistently feels odd or off and i feel like my speech is slurred or I mispronounce words, especially with TH or S endings. I've also been clearing my throat a ton and have a hard time getting up the mucus.

So basically my question is, does any of this in your expierences resemble Bulbar Onset, even after the EMG? I'm trying to educate myself the best I can so i can try and move past this. I called the neuro to ask my questions but they are dismissive and just say no signs of MND. I dont want to waste your time nor try an offend anyone, I'm just looking for your experiences or knowledge.
Dad, go back and read paragraphs 4 and five of your post above.

In the last paragraph of your post you wrote...

" I called the neuro to ask my questions but they are dismissive and just say no signs of MND.

Let it go... you do not have ALS.

You have issues that others doctors will address for you.
I appreciate your response. I know, i'm trying to sort out the issues with my tongue mouth and just for some reason keep going back to this. Thats why I just wanted to ask here about the emg, bulbar issues to try and educate myself. I know the EMG was clean but the devil on my shoulder says "your bulbar wasn't emg'd and your issues came up after" .

I don't mean to bother or annoy anyone one here.
I totally understand and have been trying to work it out. The tongue issues and perceived slurring/difficulty pronouncing words just has me thrown a bit with the addition to the twitching, I read the stickys and everything, Thats why I just asking for the experience or interpretation from the individuals on here. I by no means meant any disrespect.
No, you do not need to worry that bulbar nerves were not EMG'd. ALS affects potentially all the voluntary motor nerves. Many of us suffer from dryness during the winter and into "spring," which seems slow to arrive this year. Try a sugar-free cough drop, saline spray and drinking more liquids.

You don't have ALS.

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Thank You for taking the time to respond to my thread.
Just 1 more follow up question if anyone would mind, With Bulbar and the onset of slurred speech... Does it just start happening or is it gradual with certain words and then becomes worse and worse. Also, is it just slurred or does speech slow down with the slurring?
Dad, you really have to let go.
You don't have it, while members here who take the time to respond are struck with that plague or caregiver for people dying from it.
Your age, your symptoms, and moreover your clean clinical exam AND clean EMG make you an ALS free person.
If you're having further concern, I suggest you turn to health anxiety forums or have yourself an appointment for psychological help.
I'm not denying that the fear alone of the disease can be devastating, but the folks here cannot hold your hand while they are dying and you're in perfect health.

Thank you for your reply and I apologize for my repeated questions. I was in no way trying to upset anyone on here. I really respect that people are willing to respond to DIHALS questions. I was just trying to gain the perspective from someone who knows more about this then me in hopes I can squash this from my mind (or try). There is so much misinformation out there and I find that this site is one of the only true places to gain info and perspective. But I completely understand where you are coming from.

As you will appreciate, we have found some Q&As unproductive. Trying to parse bulbar onset is one of them. As a rough guide, PALS here with bulbar onset didn't have to ask the questions you have.

As others have said, it's time to explore and deal with your anxiety, which is only going to hobble your life [not to mention making dry mouth worse and twitches worse]. You can do that on your own or seek out a counselor. What you can't do is hang out here and borrow trouble.

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