Twitching, speech concerns

[Antoinea]

Hi everyone and thank you in advance for your time.

I’m 26 and since 4 months i’m really anxious about SLA. It started with twitches all over my body (legs, arms, stomach, back sometimes, eyes, lips…). I can’t live anymore and I think about it 24/24.

The worst thing for me is my speech. I feel like it’s difficult to speak and articulate some words with « S » and « L ». I asked to my parents, friends, and girlfriends if they noticed changes but they Said absolutely not. I feel like each day it’s worst, especialy in the end of the day. I feel sometimes I can’t swallow my saliva too.
My tongue feels too big in my mouth.

I also have pain in back of my legs, ankles.. but not cramps.

I did 2 emg (arms and legs) who came back cleans. My gm had ALS and it scare me a lot.

My question : can it be a bulbar ALS and EMG did not see it ? (It was not a bulbar EMG), but i have twitches everywhere.
All this things can be all due to anxiety ? (Slurred speech too?)

Thank you very much for your answer and have a very good day.

Antoine

 

[lgelb]

If others don't notice speech changes, they are not real.

GERD, allergies, dry mouth (which can be aggravated by stress and anxiety) are the most common reasons for feeling your tongue in the way that you do. Your PCP can rule these out, and, of course, you will want to be sure that you are hydrated, using a good lip balm, and not rushing in your speech as can happen in stressful times.

Bodywide twitches argue against ALS, as does pain as you describe. If twitches and pain were related to your ALS, there would have been limb signs on the EMGs. If you had bulbar ALS, someone would be noticing the same speech changes as you.

Take all this together, and there is zero reason to think of ALS. You have described no signs of it. A combination of anxiety when you start noticing something is off, and a few bad nights' sleep or a virus, and things can seem worse than they are. I encourage you to stay in touch with a good PCP and seek counseling if you cannot shake off your fears.

 

[Antoinea]

Thank you very much for your very Quick answer it’ s very good to read this.

Last question, in bulbar ALS, speech issues are noticiable at the begining ? I mean is it possible i notice it first and later when it will be worst people will notice ?
Or slurred speech is very fast and people notice it at the begining ?

Thank you very much

 

[lgelb]

We are all capable of telling if someone else's speech is impaired, as I am sure you have heard someone who is drunk, drugged, or injured. But we do not have as much objectivity as to our own. That is why when you hear your voice on tape or a digital file, it can sound odd.

If your speech were slurred or different in some other way, it would be noticeable to others. Speech is normal or it is not. There is no "becoming slurred."

 

[Clearwater AL]

Being no one else will make note of it… you are only 26 years old.
It is extremely, very very rare for someone as young as you to be
diagnosed with ALS. The odds against it can be six or seven digits.

Making the odds even greater you have had two clean EMGs !

My opinion… there’s not much more this forum can do for you.

And... another recent post by a 29 year old.

Many top Neuros are beginning to question if Stephen Hawkins
really had ALS or another rare Neurological disease.

 

[Antoinea]

Thank for you support… My speech is not better since 2 weeks. Sometimes it’s ok, but sometimes it’s hard to pronounce certain words. Nobody notices but how is it possible i can notice ? I’m now very anxious before talking to someone. My tongue feels to big for my mouth. And I feel like my saliva is stuck in my throat.

I still have twitches (not on tongue), and burning muscles (for example when i dry my hair, my shoulder is burning). Sometimes my feet, mouth and Hands are shaking.

Can this be bulbar als ? I saw a neuro with a needle under the chin, clean. Is it sure to say it’s not bulbar? Or it can be too early?

Thank you to everyone for your Precious Time

 

[lgelb]

A clean EMG that included examination of the bulbar area is enough to say that you do not have bulbar ALS.

Again, I would work with a good internist, who can also refer you to a counselor, to see how you can improve your situation while considering the issues mentioned above. As you say, this is no way to live and only you can begin to break the pattern.

 

[Antoinea]

Thank you for you answer. I saw on the forum that sometimes slurred speech in als can be notice only by the person concerned, then after by the family etc.. it’s scares me a lot
I ´m the only one to notice my speechs problems

 

[lgelb]

I am not sure what you think you have read, but slurred speech due to ALS is quickly unmistakeable. You had a bulbar EMG that was clean. Your other issues do not match ALS either. You are in the clear.

It is time for you to forget about ALS (I'm sorry to hear about your grandmother), and focus on what you can do to feel better. A doctor and counselor can help, but we cannot substitute for those here.

 

[Antoinea]

Thank you very much. Your messages are very important for me, you’re a good person.

I will try to forger als and enjoy my life. Thanks for everything