Scared of ALS

I had to create a new login cause I must have typed my special word wrong.

I just turned 36.

My fear now is Bulbar onset. I am not sure the Deltoid muscle is good enough for Bulbar. I see my tongue twitching when i open my mouth. The Doc, before the emg, noted he could tell I didnt have ALS due to how I was talking. I thought nothing of it. he test my right side from foot to shoulder and says im good to go. I have gotten no one to be able to answer that Deltoid question and if that is good. If it is my tongue must be my anxiety. I chew gum a lot cause I think it helps me talk better. My wife notes no slurring. Stumbling yes. Slurring no from her

Hello joseph. I'm really guessing anxiety is at play here. Your're 36 so that points away from ALS. Bulbar onset is very rare just like ALS in general. With bulbar onset you will generally begin to start slurring your speech & have difficulty with certain words. The mind is a powerful thing & sometimes we can find ourselves in the grip of something we see as catastrophic but in reality it's just our minds trying to convince us otherwise. You mentioned in your last post that you saw a ALS specialist. They specialise in the field so he/she would know pretty quickly if ALS was suspected. I urge you to stop googling symptoms. Don't ger me wrong, we've all done it. Yes, even me, but it can be a downward spiral especially for people who suffer anxiety. I really do suspect what yoh have is anxiety by convincing yourself you have this incredibly rare disease that will inflict around 2 in every 100,000 people. Just a sidenote. Thanks for at least replying. Alot of people come here looking for advice & you give it but never bother to reply.

Sorry but i forgot to mention in that post that with ALS the twitching always come much later in the disease not at the start because the muscle is dying.

Well thats the thing. I feel like I am struggling with some words. I may not be slurring my speech but I dont know if it t is my anxiety that makes me stumble or ALS.

Also cant figure out if the Deltiod poke i got is good enough to rule bulbar out.

The guy who did the EMG is an ALS specialist.

I have also done this sometimes. I feel like i'm tripping over my words & i think i'm having a stroke. Lol! Anxiety has the ability to manifest itself in many ways but as i said, if you have seen an ALS specialist i can pretty much reassure you, you don't have it. If it's still concerning you, i would advise you to see another specialist for a second opinion. I'm not sure what country you're in but i'm in australia & i have to wait 4 months to see my rheumatoid specialist but in the meantime my symptoms are getting a little worse each day. Get a second opinion but i think you will find you'll get the same result. Anxiety can be cruel but that's only if we let it.

i am in the US. I have had blood work, MRIs and the body EMG.

My fear is the tongue and is it bulbar onset and they didnt test me for it.

With bulbur onset you will have trouble swallowing & talking. Not sure how your deltoid muscle could be involved in this coz that's a muscle that's connected with your shoulder. If you can still talk & swallow you don't have bulbar onset ALS. As i mentioned before, your age is in your favour. ALS is more likely to strike in older people but yes it can happen at any age but you don't have it. Please don't think i'm being rude cos that's not my intention but i think you are overthinking this a little. Alot of people develop a symptom, they google it & then they think they have it. Many people would'nt have even heard of ALS unless they googled it due to it's rarity. Please seek a second opinion if necessary but they are going to tell you the same thing.

I dont think you are being rude. It is hard to get a second opinion when One Neuro did the Clinical and one did the EMG.

Its just im very very very aware of my tongue in my mouth. maybe its causing fatigue of my tounge.

I have thought about it not being ALS some and something related to my COVID vaccine.

I think you just hit the nail on the head when you said you are very aware of your tongue. It's abit like feeling mild pain but once you occupy your thoughts with something else all of a sudden you no longer feel it. I really do think what you are experiencing is anxiety related but certainly not ALS. Just abit of food for thought, the average neuro specialist would probably only see a handful of cases of ALS in their entire career. When i first went to my doctor about my arm fatiguing & strange sensation in my legs i expressed my concerns about ALS & this is what he told me. He said, imagine you are playing a game of family feud (which is an australian tv show) where the team have to guess the number one answer to the lowest answer. He went on to say that the top answer would get about 40 points but ALS would get about 12 points if you get what i'm saying. In other words it would rate very low on the scoreboard. That made me feel a whole lot better cos it made sense & i'm alot older than you.