vincy
05-08-17, 08:23
Hi everyone.
So I have been here for a while fearing bulbar onset ALS. A lot of you will probably remember this. It has been about 2 1/4 months that I "feel" like I can't talk properly.
It seemed that there weren't a ton of people with similar problems aside from the aboutBFS website (where there admittedly were a good amount of people who swore they were slurring their speech). Lately though I have seen 5 or 6 people on this forum who feared bulbar ALS with the exact same problems as me.
I'm sure you guys understand that I'm not happy you have the fear, just that I know that I'm not the only one whose mind is playing these tricks on me this way. Seeing more people SWEAR they can't speak properly while being obsessed with bulbar als while having other people tell them they are PERFECTLY normal makes me feel at least a bit more normal.
Apparently if we're worried about a disease they affects speech first, part of our brain that is being hypervigilant (and just being deceitful to us sometimes) is going to make us think we can't talk.
I'm getting to the point where I have to be convinced I don't have bulbar. Every account I've heard...after 2+ months you go from slight slur to sounding like you're 10 shots in. That isn't me. After this time, still nobody notices.
And while I've been sitting here worrying about ALS, there ARE many reasons that I've discovered that COULD potentially be the cause.
To list them:
1) Untreated TMJ + bruxism in itself
2) Wisdom teeth slightly changing my tooth alignment (need to get them pulled :\ )
3) Excess saliva from a) wisdom teeth leaving too little room for my tongue or b) GERD, causing me to change the position of my tongue to account for the saliva
4) tension in jaw and/or changes in resting position of the jaw to accomodate the tmj/bruxism
5) just pure anxiety
The problem is those things don't worry me so I'm not concerned with them.
But after this amount of time, I am starting to feel better and better. Even if it is slowly
So to anyone that has posted recently about potentially just waiting and seeing how it goes.
No doubt. The last 2 months have been the worst of my life by far. This is from someone who has had depression for years and whose nickname was "sadboy" to my high school friends
I can live with being perpetually sad. I got lucky with my brain and have never been a suicidal/self harm type, so I could live with that. I definitely couldn't live with this fear for much longer though.
EVERY SINGLE PERSON who has talked about this online that I've read....said their ALS fear was their worst bout of health anxiety they've ever been through.
I THINK/HOPE I'm getting to the end of it.
(One thing that has been helping me is...to the bulbar onset PALS that drink alcohol...they often say that alcohol made their problems much worse. i.e. 1 drink would make them sound like they had 10. I've been drinking pretty heavy recently before going back to school, and the more I drink the more I think I can talk properly -- even when I record myself and relisten.) If I don't slur my words after many many drinks you can bet your ass I'm not slurring them sober. Perhaps I am talking slower..perhaps I am having a harder time finding the right words..and perhaps I'm tripping over my words more. But those are NOT ALS Symptoms. SLURRING IS.
If your goal is to just wait it out. Know it will be hell. Know that if you're as bad as controlling when you get afraid about it..you'll probably have a hard time functioning normally. I owe so much to my girlfriend for being right by my side no matter how silly I sounded with my fears.
Part of what's gotten me through, too, is the help of asking doctors online. I got a post deleted before for "advertising" for one of these sites, but I don't want to take meds. I don't want to do CBT. I like how my brain works. It's just pretty inconvenient at this specific time. I want to be as uniquely me as possible. Part of that has ALWAYS been getting to the bottom of things as much as possible. Rather than getting another EMG on my tongue (which I don't have money for anyways...college costs too much man) I asked Dr.'s online about the way my tongue moves. Why it wiggles a little bit at rest. Why it quivers so much when sticking it out. What causes some people's to quiver more and to quiver less. I asked about everything I needed to so I could learn what my body is ACTUALLY doing and not simply not worry about what its doing. Getting more tests is reassurance. Learning about your body (which will also give you reassurance through knowledge) isn't part of the bad cycle.
People that are reading this:
If you're like me (I'm 19 and worried about sporadic bulbar onset als), there have only EVER been 2 or 3 recorded cases of sporadic bulbar onset in this age group. That is as rare as it gets. If incidence for ALS is 2/100,000 per year.. and 20% of cases are bulbar thats 2/500,000 of bulbar onset per year.
2 or 3 cases have been recorded in the last 30 years in which I found the most records for...that is something like 3/4,000,000,000. You're 5 times more likely to get struck by lightning tomorrow than you are to get bulbar ALS. Have you ever been worried about getting struck by lightning tomorrow. Not even at some point in the year. Tomorrow.
So I have been here for a while fearing bulbar onset ALS. A lot of you will probably remember this. It has been about 2 1/4 months that I "feel" like I can't talk properly.
It seemed that there weren't a ton of people with similar problems aside from the aboutBFS website (where there admittedly were a good amount of people who swore they were slurring their speech). Lately though I have seen 5 or 6 people on this forum who feared bulbar ALS with the exact same problems as me.
I'm sure you guys understand that I'm not happy you have the fear, just that I know that I'm not the only one whose mind is playing these tricks on me this way. Seeing more people SWEAR they can't speak properly while being obsessed with bulbar als while having other people tell them they are PERFECTLY normal makes me feel at least a bit more normal.
Apparently if we're worried about a disease they affects speech first, part of our brain that is being hypervigilant (and just being deceitful to us sometimes) is going to make us think we can't talk.
I'm getting to the point where I have to be convinced I don't have bulbar. Every account I've heard...after 2+ months you go from slight slur to sounding like you're 10 shots in. That isn't me. After this time, still nobody notices.
And while I've been sitting here worrying about ALS, there ARE many reasons that I've discovered that COULD potentially be the cause.
To list them:
1) Untreated TMJ + bruxism in itself
2) Wisdom teeth slightly changing my tooth alignment (need to get them pulled :\ )
3) Excess saliva from a) wisdom teeth leaving too little room for my tongue or b) GERD, causing me to change the position of my tongue to account for the saliva
4) tension in jaw and/or changes in resting position of the jaw to accomodate the tmj/bruxism
5) just pure anxiety
The problem is those things don't worry me so I'm not concerned with them.
But after this amount of time, I am starting to feel better and better. Even if it is slowly
So to anyone that has posted recently about potentially just waiting and seeing how it goes.
No doubt. The last 2 months have been the worst of my life by far. This is from someone who has had depression for years and whose nickname was "sadboy" to my high school friends
I can live with being perpetually sad. I got lucky with my brain and have never been a suicidal/self harm type, so I could live with that. I definitely couldn't live with this fear for much longer though.
EVERY SINGLE PERSON who has talked about this online that I've read....said their ALS fear was their worst bout of health anxiety they've ever been through.
I THINK/HOPE I'm getting to the end of it.
(One thing that has been helping me is...to the bulbar onset PALS that drink alcohol...they often say that alcohol made their problems much worse. i.e. 1 drink would make them sound like they had 10. I've been drinking pretty heavy recently before going back to school, and the more I drink the more I think I can talk properly -- even when I record myself and relisten.) If I don't slur my words after many many drinks you can bet your ass I'm not slurring them sober. Perhaps I am talking slower..perhaps I am having a harder time finding the right words..and perhaps I'm tripping over my words more. But those are NOT ALS Symptoms. SLURRING IS.
If your goal is to just wait it out. Know it will be hell. Know that if you're as bad as controlling when you get afraid about it..you'll probably have a hard time functioning normally. I owe so much to my girlfriend for being right by my side no matter how silly I sounded with my fears.
Part of what's gotten me through, too, is the help of asking doctors online. I got a post deleted before for "advertising" for one of these sites, but I don't want to take meds. I don't want to do CBT. I like how my brain works. It's just pretty inconvenient at this specific time. I want to be as uniquely me as possible. Part of that has ALWAYS been getting to the bottom of things as much as possible. Rather than getting another EMG on my tongue (which I don't have money for anyways...college costs too much man) I asked Dr.'s online about the way my tongue moves. Why it wiggles a little bit at rest. Why it quivers so much when sticking it out. What causes some people's to quiver more and to quiver less. I asked about everything I needed to so I could learn what my body is ACTUALLY doing and not simply not worry about what its doing. Getting more tests is reassurance. Learning about your body (which will also give you reassurance through knowledge) isn't part of the bad cycle.
People that are reading this:
If you're like me (I'm 19 and worried about sporadic bulbar onset als), there have only EVER been 2 or 3 recorded cases of sporadic bulbar onset in this age group. That is as rare as it gets. If incidence for ALS is 2/100,000 per year.. and 20% of cases are bulbar thats 2/500,000 of bulbar onset per year.
2 or 3 cases have been recorded in the last 30 years in which I found the most records for...that is something like 3/4,000,000,000. You're 5 times more likely to get struck by lightning tomorrow than you are to get bulbar ALS. Have you ever been worried about getting struck by lightning tomorrow. Not even at some point in the year. Tomorrow.