Another twitcher worried about ALS :(

[Andrash]

Update: Mostly focused on the fact that there are certain words that are harder to enunciate, e.g., saying the "ch" or "oo" sounds. Feel like I have to make a harder effort to say these. Gums seem tighter almost like you've had a novacaine shot at the dentist. Also my toes hurt really bad after I've stood or walked for a half hour or so.....very distressed yet holding on to the thought that if this is something sinister like ALS, a doctor really can't do much. Need to desperately come out of my downward spiraling thoughts and depression over this :(

Do other people notice that you speak slower/slur words/can't pronounce certain words/sounds properly?

[hope_girl]

I think if you focus on your talking and obsess about it and have anxiety that’s saying “am I slurring?” Then you will start to believe you are. This ALS rabbit hole is hard to get out of. I struggle with it right now too but I have to tell myself that what is REALLY going on is OCD-like health anxiety and that is the VERY REAL thing here. Therapy is the only thing helping me. I’ve read online about health anxiety sufferers and ALS fears seem to be their “lowest point”. I hope this thread becomes more about how to deal with the anxiety and stop feeling this fear and obsessive thinking. I know that is what will actually help us all

[Dentalmaniac]

Hi Andrash, i’ve Been telling my family about difficulty in pronouncing certain words but they don’t seem to notice it. Hopegirl yes I am definitely focusing on my speech and the more I focus the more I feel it’s becoming difficult to talk. It’s been about six weeks now when I had first felt I was having difficulty saying certain words. That was followed by a weird sensation in my gums as if they are being pulled. I want to say that for a few weeks the gym sensation had gone away and in fact I was thinking to myself wow that weird sensation has gone and happy about it and boom it came back. Maybe I started feeling it because I was thinking about it. At the same time my focus on speech has become obsessive! I hope I can come back and tell others how I obsessed needlessly and created these symptoms through the power of my thoughts and that I’m still going strong. Thank you all for bearing with my long ramble and for being patient with me and continuing to respond!

[Fishmanpa]

Generally speaking the first symptom of bulbar is slurred speech because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign!

Positive thoughts

[Dentalmaniac]

Fishmanpa, the first symptom being spurred speech is what has me stressed. Not able to say certain words easily has me in a fix right now!

[Fishmanpa]

Fishmanpa, the first symptom being spurred speech is what has me stressed. Not able to say certain words easily has me in a fix right now!

I’ve Been telling my family about difficulty in pronouncing certain words but they don’t seem to notice it

The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign!

Positive thoughts

[Andrash]

Hi Andrash, i’ve Been telling my family about difficulty in pronouncing certain words but they don’t seem to notice it.

If you had ALS, you wouldn't notice the slur but they would. They would have asked you if you had been drinking. You don't have ALS. Other people not noticing means your speech is the same as before.

[jemini70]

Hi Dentalmaniac - have you check out the posted sticky on why you don't have ALS? Might be helpful! I'm often twitching, and yes, have also managed to convince myself that my speech was slurring (it's not - you're just over thinking it). As I've seen around the forum, ALS is about failing, not feeling. This is from an ALS Support page:

"ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.

It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work."

So the fact that you maybe can't do as many exercises on your left side is not indicative of ALS.

This is also from the page:

"If you have muscle twitching and the internet says that is a symptom of ALS, pay attention. Twitching (fasciculations) is sometimes a symptom of ongoing ALS. It is seldom, if ever, a first symptom of ALS (especially if it is all over your body). Twitching is very common and is frequently caused by too much caffeine, Rx meds, fatigue, over-exertion, anxiety, stress, and many other common causes If you have twitching without clinical weakness, atrophy or hyperreflexia, your twitching is probably not from ALS, which is a very, very rare disease.. "

Your twitching is not ALS - it could be anxiety, stress, vitamin deficiency, etc. I twitch all the time and I don't have ALS.

The ear and jaw have lots of tiny muscles around them that tighten and constrict when anxious and I highly suspect that is the "tight" feeling you feel. Happens to me quite frequently.

After reading this, it makes a lot of sense. havent heard ALS described this way at least as it relates to worry about muscle twitching and onset of ALS.
wifi example was really good. GAD, high anxiety over health is by itself a debilitating disease worst than many of the ones we obsess over

[Dentalmaniac]

Hi all, wanted to give an update to anyone who comes across this thread. It has now been six months since I started twitching....I still do, but I can still do all physical activities, so I guess I'm ok. It's also been 3 months now since I started feeling that I have difficulty saying certain words...I can still speak fine (although I feel I have difficulty pronouncing certain sounds after certain other ones), I can still whistle, so I guess I'm still fine. I do become anxious whenever I feel I have to speak slower because of this, but I pull myself out thinking if it was something it would have progressed by now. I will come back again in a few months and report again. Keeping my fingers crossed and hoping for the best for everyone!