questions for anyone with bulblar

[zac111]

i have a question ive been checked out by 3 neuros but my symtoms have only been present for 5 months now.i bite my tounge sometimes and still have twithing which is mainly in my legs now.my big concern is my swallowing after reading sevral post about how long it took to dx.my swallowing is good as far as eating are drinking but when i swallow normally without food are drink it feels as i have to push my salavi down and most of the time if feels as if im gulping when i swallow my salavi are theres something poping in my throat i just had a barrium swallow test done and waiting on results.any insight would be great thank you,shawn

[zac111]

any help wpould be great.

[musicsmiles]

Hello Shawn
My husband was dx in October with the Bulbar onset of ALS. The first sign of his Bulbar onset was slurring his speech. It is very hard for him to swallow and he couphs alot. He has alot of trouble controlling his salivia, but he takes medicine at night that helps control that. He doesn't bite his tongue, sometimes his lip. Have you had an EMG?
My husband's twitching started in his arms and face. The twitching has moved on to his chest and down around his waist. Have you tried visiting an actual clinic that highly specializes in ALS? Because it doesn't sound like you know alot about what is happening to your body. From all the information we have received each person is affected by this disease differently. Good luck and find out all you can, take it one day at a time and live each day like it is your last.

Belinda

[zac111]

thanks for your replys i do have trouble with my speech and do hve twithing in my face but not constant have had them in my neck and stomack,i was seen by dr. glass at the als center in atlanta.i dont know what atrophy looks like in the tounge i do have on the right side of my tounge on the edge and indention that recently has showed, but the top of the tounge is full on both sides.

[CindyM]

Zac my friend. It is time to go out and have some fun. Look at it this way, even if the docs missed something-a big if considering the clinic you went to- but even if, your symptoms will either get better, worse, or stay the same. These things are out of our control.

My advice is to not spend a lot of time worrying about what the symptoms mean. You don't need treatment for anything, and you have been cleared for the one thing for which there is no treatment so count yourself lucky.

So put down the computer mouse and go have a lovely day, buddy! :-D Cindy

[zac111]

thanks cindy,its easy to do sometimes but then again when its hard to swallow and my words wont come out and then they slur and everyone i talk to has to ask me what i said twice those days are hard i was mabey wondering if it was to early for enough symtoms to be present affter 5 months the one question i didnt ask dr.glass.

[jimercat]

did dr. glass or the RNs at the clinic give you their business cards? if so, you might want to call and leave a message for one of them re: your question. they have been very helpful with anything and everything we have called them about. they usually call back the same day.

i personally cannot answer your question because we really don't know when the onset of ALS started with my husband. was it when he started falling over two years ago or when he found he couldn't swallow and had to be hospitalized? the signs were apparently very black and white for my husband's diagnosis was immediate and confirmed by 4 docs (3 neuros).

[Al]

Just a suggestion here zac. If I recall correctly the docs at the clinic said there was nothing wrong with you. Call and leave a message on their voice mail when you are slurring and not talking well. Then get a friend to call and repeat exactly what you have said and ask them to save it for the doctor for your next visit. Then when you go to visit them you will at least have some record of your slurring. Or just use a tape recorder for a few days and tape yourself.
AL.

[zac111]

good ideal al ill do that they might think im crazy for wanting another appoinment but i think your on to something thanks.

[Jamiet]

How about that al, what a good idea........confirmation we're not nuts....the proof is in the puddin....

Zac, try to cope and move forward as much as possible....ok....

YOu need to look at other diseases also......lymes...!!! It's controversial, but, you never know. Also, like MG and about 20 other things.

take care

jamie..

[CindyM]

Hey Al-I just saw your idea. Annmarie is right! You are one smart cookie. I am going to do that myself, on the days when I think i sound like I am talking with a mouth full of marbles. Be interested to see just how "drunk" I really sound.:-D :-D

Since I hate sounding drunk without having actually imbibed! :-D Cindy