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also i love your attitude and i hope i don't come off as a jerk or insensitive for asking you such question. you are really a helpful bunch of people, i appreciate SO much.

22 . i just can't stop thinking at my age and why. i feel alone and scared.
 
also i love your attitude and i hope i don't come off as a jerk or insensitive for asking you such question. you are really a helpful bunch of people, i appreciate SO much.

Not at all. I have als, but I am no expert on it. There was a writer I'm sure some here know who he is. That lived with als for 40 years. Everyone is different with their symptoms, and how they came about. HB I know you are probably scared out of your whits. I hope you don't keep digging, and convince yourself that you have als. Do what you do, have some fun, and keep your mind busy. Your not going to get a DX on the internet. Before I got my DX....I enjoyed not knowing.
 
i know you guys can't diagnosed (bless ya), but i mean, does it sound like classic symptoms of als?
is 22 really rare? kinda rare? totally possible?
 
also i've read, the younger you are the slower the progression?
 
also: this is gonna sound absurd but hear me out. i boiled water in a pot, left it for a long time, it burned the bottom black. yet i continued using it and using it to make tea with even though it was burnt. maybe particles of the metal were coming off in water? i drank the boiled water from this singed pot for like half a year.
i know i sound like i'm going crazy. but maybe this is a possibility. exposue to this metal.
crazy thoughts, but i think em.
 
also: this is gonna sound absurd but hear me out. i boiled water in a pot, left it for a long time, it burned the bottom black. yet i continued using it and using it to make tea with even though it was burnt. maybe particles of the metal were coming off in water? i drank the boiled water from this singed pot for like half a year.
i know i sound like i'm going crazy. but maybe this is a possibility. exposue to this metal.
crazy thoughts, but i think em.

I just read your whole thread again. Your basically saying that your upper, and lower symptoms are simultaneous? From what I understand is, it starts either at your hands, or feet "lower", or bul bar onset "upper". Lower works its way towards your trunk, and upper goes through your trunk, and spreads to the limbs. It spreads from its point of origin. (I may be wrong about this) . Really all I know is what I have read, and the few things my neuro has told me.
 
can it progress to from lower to upper in as little as 6 months when you notice the twitching in feet?

what kills me is hte look of my tongue. had my tongue not look so bad and teeth-marky and wavy on the side. and when i stick it out it wiggles and can't hold still. if not for that, i'd have a hope and a prayer. but these symptoms + deteriorated tongue/swallowing problems/saliva on pillow always in morning? it's almost too much of a coincidence.

how rare is it at 22?
 
can it progress to from lower to upper in as little as 6 months when you notice the twitching in feet?

what kills me is hte look of my tongue. had my tongue not look so bad and teeth-marky and wavy on the side. and when i stick it out it wiggles and can't hold still. if not for that, i'd have a hope and a prayer. but these symptoms + deteriorated tongue/swallowing problems/saliva on pillow always in morning? it's almost too much of a coincidence.

how rare is it at 22?

I have upper, and my symptoms started a year and a half ago. So far my twitching hasn't made it much farther than my biceps. They twitch about 50% of the time.
I would say its extremely rare at 22. Especially if its not in your family tree. I see your in Canada? I guess it takes awhile to get your Doc appointments?
 
so obviously it's not l ikely that i'm twitching in my legs and then deteriorating in my tongue and difficulty swallowing?
it's usually like feet>legs>trunk ...eventually to tongue etc? (again *usually* - i know there are all different types of cases... but just a general thing I'm lookin for)

also, what are your thoughts on the metal from the burnt pot I was using to boil water? sounds entirely dumb that i'd continue to use it after it was already burnt to a black/brown color, eh? well, that's me! lazy and just don't care sometimes. definitely even a hairbrain idea to me, but it has me thinking.

glad to know that 22 is rare. some sites i read say onset usually 50-60, some 40-60, some even 30-60 - the latter scares me because i'm only 8 years from 30, and if 30 is "typically" category, then obviously 22 happens enough times to not be really rare. rare enough, but not like mindblowingly rare. scary.

the tongue problem. ah, it's driving me crazy

well neuro appointment is looking to be 6 months from now? is that a really long wait in terms of this?
 
Harvey, no matter what is wrong with you, its in your best interest to calm down.

Try re-reading the assurances from others that have already responded to your questions...

Here is a link from an earlier discussion on this forum:

https://www.alsforums.com/forum/showthread.php?t=6931

You can also use the search feature of this forum to gain information (look up above on this page ^ its over on the right side in the blue bar)... even better would be to do something ~ anything ~ to occupy your mind other than fixating on ALS. And, if you don't have confidence in what your doctor found, go to another one.

Please keep in mind that Wright, the member that responded earlier to your question teaches in this field of study on a college level.

take care :)
 
so obviously it's not l ikely that i'm twitching in my legs and then deteriorating in my tongue and difficulty swallowing?
it's usually like feet>legs>trunk ...eventually to tongue etc? (again *usually* - i know there are all different types of cases... but just a general thing I'm lookin for)

also, what are your thoughts on the metal from the burnt pot I was using to boil water? sounds entirely dumb that i'd continue to use it after it was already burnt to a black/brown color, eh? well, that's me! lazy and just don't care sometimes. definitely even a hairbrain idea to me, but it has me thinking.

glad to know that 22 is rare. some sites i read say onset usually 50-60, some 40-60, some even 30-60 - the latter scares me because i'm only 8 years from 30, and if 30 is "typically" category, then obviously 22 happens enough times to not be really rare. rare enough, but not like mindblowingly rare. scary.

the tongue problem. ah, it's driving me crazy

well neuro appointment is looking to be 6 months from now? is that a really long wait in terms of this?


Well. Not saying Its impossible. It just sounds strange to me. My neuro mentioned to me that ther is upper, and lower onsets. I don't know what the possiblities are for both. With me it not just the tongue. It effects me from my jaws, and down my neck. Sometimes it feels like my jaws are going to clamp shut like visegrip pliers. At night when I put my head on the pillow. I can hear the moto neurons in my ears when I clinch my jaws. Sounds like a small engine. My very first symptoms were severe cramps under my chin. They would put me to my knees!
 
Harvey ... saliva on the pillow is NOT a symptom of ALS. Everybody on earth at some point sleeps with their mouth open, producing saliva on the pillow in the morning. This is completely normal and almost universal.

Tooth marks on the edges of your tongue are also completely normal. They are NOT a sign of ALS. Sounds to me like your brother was trying to mess with your head. (And succeeded.)

You say you forgot to show the neuro your tongue. If you had any real symptoms of bulbar onset, he would have examined it without prompting. "Real" symptoms would be slurred speech, inability to swallow liquids, etc.

And yes, 22 is very, very young to get a disease that usually shows up in middle age or older.

Please relax. And talk to your doctor about your anxiety and ask how you might control it. He may recommend medications, or counseling. Take his advice.
 
awww i'm sorry to hear that. you're a very strong person, so level-headed and understanding. You too, Rose. I really admire you guys, you're very positive people. I'm no cynic, but most definitely the type of person who will worry myself into a stupor/depression/anxiety-ridden existence - well actually it took my thinking about ALS to actually get me to realize this. I've never obsessed or worried about something as much as I have this, and unfortunately while I know I shouldn't stress until a proper diagnoses, I'll worry anyway. It's inevitable. It really didn't become "real" until the throat and tongue problems. otherwise, again, I could assure myself that, like said before, it could be a myriad of different things.
to obsessively ask about life expectency and demographics is kinda insensitive, and for that I'm sorry. There are those who are my age and have been struck by this and other diseases, it's a fact of life.

but if the saliva and tongue problem aren't immediately indicitive of ALS, what about sudden choking? I choke a lot lately. Like even just 5 mins ago. NEVER happened before. Not trying to sound stubborn, I'm definitely hearing you out, and your opinion has actually helped calm me a bit :)

life is definitely too short for me to obsess, I know. It's not even the dying myself. That's sad, but a way of the world. It's my Mom and my brother, the pain it would cause them (I know that so many on this forum can actually really relate to that statement, so my heart goes out to you) - anyway... this is really depressing stuff.
I can remind myself I'm young, and that's a bonus as far as the probability goes.

The burnt pot, the punches to the head worry me. But I guess those aren't really in the Risky side of the business. Hopefully not, eh. hehe.
 
Harvey boy, if it helps you:
Im 23 (was 22 like you when it started) and I have fasciculations for more than 1,5 years. I have them in my foot, back, arms, thigs..everywhere. Not constant (except my foot).
So many doctors told me its not ALS, since it doesnt start with widespread fasciculations, so many PALS told me I dont have..2 clean EMG...and Im still wreck! Dont let it ruin your life like I did :(
 
Blizna, are you saying that fasciculations in your foot are constant ? Does it mean that they were present during EMG ? Did they test corresponding nerve with a needle, and found nothing ?
 
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