Developing Bulbar Symptoms

[BeckyUK]

Hi,

Although as yet I have no formal diagnosis (beyond being told that I have spastic paraparesis caused by the premature aging / death of my upper motor neurones), my neuro has advised me to go back to him as soon as I display any other symptoms. As I'm not the sort of person to want to go back unless I think I really have something to worry about, I hope no-one minds if I run a few new symptoms past you to see if they are consistent with the bulbar symptoms you may have experienced. At the moment I am starting to suffer with the following:

- Hoarseness of the voice which comes and goes - sometimes starts mid sentence and leaves me unable to finish.
- Occasionally spitting when I talk.
- Stumbling over my words - I sometimes feel that I am struggling to say certain sounds such as 'shh' and 'emm' (although no-one else seems to have noticed this yet).
- Some random choking episodes and a need to clear my throat more often.
- My husband has noticed I have started to make a strange noise in the back of my throat while I'm asleep. He says it only seems to happen on the out breath and is a bit like a snore but not quite. I have woken myself up a few times making this sound.

Grateful for any opinions!

 

[Phil M]

Well, I am a classic Bulbarian...The speech problem with this bulbarian is the muscles in my tongue, and throat are weakened. My speech problems are pronunciation related. My tongue barely reaches the roof of my mouth. Try to talk without using your tongue, and you have it! My vocal cords seem fine.

 

[JeffP]

i have bulbar to when i talk i sound drunk half the time .my muscles in my throat are weakened to the point i needed a peg tube i would get a second opionion if i were you .sitting waiting brings on stress and worry prolonging it is not a good thing it can creep up on you fast thats just my two cents

 

[Judith]

I too started in the bulbar area. Your first 4 symptoms sound like how mine started. Then i was slurring and now have no speech at all. I would ask your neuro for an emg/ncs test.

judith

 

[BeckyUK]

Thanks very much. I think I will have to bite the bullet and go back to the neuro and demand the EMG that he seems so unwilling to give me at the moment.

 

[Phil M]

He should stick you under the chin if you have bulbar. Sounds bad, but actually the stick in the neck, and the bicep was the worse for me. Its not that bad though if the sticker knows what he is doing.

 

[Judith]

My EMG/NCS wasn't bad. My neuro is very good.
BeckyUK, I don't know why your neuro is unwilling to test you. I would demand it.

Judith

 

[handinhand]

The dr that did my test was very good at it . Hardly felt the needle at all. It is so tiny and if they have done a lot of them,it will be fine. Really... I would get a second opinion ... My first Nero insisted on it.... I hope you find out soon what is going on. I pray it isn't ALS... Linda

 

[BeckyUK]

Well, five months after my original post, I have managed to get an appointment with my neuro. I think I'm going to press for the EMG as my symptoms have progressed quite a bit in this time:
- I now have to sleep with a folded towel on my pillow due to the amount I drool in the night (very glamorous!)
- If I have the misfortune to roll onto my back I wake up with the saliva overflowing out of my mouth. The first time this happened I was dreaming that I was being water boarded and I woke up with spit all over my face!
- If I sleep on my back (and aren't having a drowning dream) I often wake up choking as if my throat has just closed up.
- I am now unable to eat toast, cookies or any other delicious crumbly thing as they make me cough or choke. I even choke on my own saliva
- I'm unable to talk for even short periods (5 mins or so) as my voice goes really hoarse and I start to cough violently. This is causing real problems at work as I have to give presentations.

I don't seem to have any other symptoms such as face or tongue weakness, everything is confined to my throat.

I've got my appointment in a couple of weeks so I'll let you know how I get on...but since this is the UK NHS I'll probably be waiting 6 months to be fitted in for the test! :roll:

 

[Beach Bum]

I started random chocking Aug 2009,take a sip of water and choke on it,I was living alone at the time and some times though I would pass out,went to the street,if I did maybe someone could help.I always would recover by myself.saw a doctor and he did the endascoptic and dilated my esosgous(I cant spell) and told me I had Barrets esoshgus,after that the chocking went away.come spring,March 2010 the area is covered with pollen,my first spring in SC,my voice like yours began to be horse and raspy,saw my primary care and he sent me to a throat dr.

 

[Beach Bum]

Throat dr puts the camara down my nose,they spray all kinds of crap down you nose,it was stinky but it numbs your throat,he said every thing on the voice box looks good,my nose never felt the same again,appox 10 days after the camara I started to Slur and my voice began to have a nasal sound.Also Im a swimmer,a swimmer inhales throug his mouth and exhales through his nose,I could not exhale through my nose,my breathing was not normal,no shortness of breth.Anyway follow up with the throat dr and he sends me to neuro dr,neuro told me ALS mid Aug 2010,now I can hardly talk,had 40 years in sales,now I could not give an apple away!

 

[abbas child]

Becky, as it's still (you believe) all within your throat, yet has progressed to this point, I hope you can get the EMG. Something is far from right. I have no significant bulbar symptoms, but my throat has definitely been hit by ALS. I began with the feet and slowly worked up the body-- my voice is hoarse and is sometimes only a whisper due to the throat involvement. While I am conscious of swallowing saliva and sometimes think "I have too much saliva", I don't yet drool, and can sleep fine on my back. I don't therefore know where your saliva problem originates--it may well be throat. A bulbarian will have to address that.

Beach Bum, sorry the pollen increased your coughing, and really sorry you've passed out from choking. Oh, just saw your following post. That really stinks, that right after the nasty test your nose quit exhaling. Shewy.

 

[BarryG]

Excess saliva in bulbar ALS is not excess saliva it is decreased swallowing. Strange that you've had no face or tongue weakness as the tongue is usually the first to go resulting in slurred speech.

 

[Judith]

Beky, I am a bulbarian. I went through 2 general doctors. The first thought my nasally voice was caused by stress, so he put me on Lexapro. The second thought it was allergies, so I was sent to an ENT Specialist who performed the endoscopy. It wasn't until I went to a third general doctor that said my problem might be neurological and from there I was on the correct path.
Do press the neuro for an EMG/NCV test. Are you going to be seen by a neuro that specializes in ALS?
I am just curious, but do you have breathing problems also?

Judith

 

[Kirk]

Becky - i'm a bulb too. mine started with slurring. i blew it off llike a typical male and didn't go to the doc till i woke up choking in the middle of the night. please update us soon...so sorry you are having to deal with this...praying you dont have ALS