Old 04-19-2009, 06:49 PM #16 (permalink)
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Yeah, there is a lot going on, who knew? or even thought about it? That is one of the things that is so deceptive when the distinction is made that it is the voluntary muscles involved with MND, they may be voluntary, but we don't think about how we do it.

During my last speech pathologist appointment, (two were in the room with me) and one asked me if I could touch the tip of my tongue up behind my upper front teeth with my mouth open, and I was proudly showing how I could still do it ~ and she turns around, and says to the other guy with an affirmative nod, that I was raising my mandible rather than lifting my tongue. So I said, no no, I am too, so she said for me try to put my finger in between my upper and lower teeth while I did it, and I discovered my mouth was not even open wide enough to wedge part of my fingertip in.
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Old 04-20-2009, 11:04 AM #17 (permalink)
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Blues:

There are other things that can cause speech slurring besides bulbar ALS. Although that was my ititial diagnosis, it looks more like I have sero-negative Myasthenia Gravis because my symptoms have improved since I have been on Mestinon.
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Old 05-26-2009, 04:30 PM #18 (permalink)
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How is bulbar onset diagnosed?
How many time could spend before ALS development from Bulbar to the rest of body...
The first symptons of bulbar als are unability to speak? or troaght esofag pain...
Is it true that if you could move quickly your tongue is unlikely to have bulbar on set...
Bulbar could start at troagth and after that tongue?

this is some questions i have

regards
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Old 05-26-2009, 09:17 PM #19 (permalink)
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Everlast ... bulbar ALS is diagnosed the same way limb onset is. Clinical observation, lots of blood work and an MRI to rule out other conditions and EMGs.

Among the other conditions that also cause disarthria (slurred speech) are myasthenia gravis, strokes, and Parkinson's Disease.

It is my understanding that bulbar onset most frequently starts with speech, followed by swallowing problems. I haven't heard of throat pain connected to it.

Every ALS case is unique, and there is no way to predict how fast or slow bulbar onset will spread to other parts of the body.

As for moving your tongue back and forth quickly: tongue movements do slow down as your speech deteriorates, but it is a gradual process. If you are able to move your tongue really rapidly, your speech would probably still be pretty good. As others have said (Barry in message below) I could not detect my voice slurring ... other people pointed it out to me before I could hear it myself.
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Old 05-27-2009, 01:42 PM #20 (permalink)
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Quote:
Originally Posted by BethU View Post
Everlast ... bulbar ALS is diagnosed the same way limb onset is. Clinical observation, lots of blood work and an MRI to rule out other conditions and EMGs.

Among the other conditions that also cause disarthria (slurred speech) are myasthenia gravis, strokes, and Parkinson's Disease.

It is my understanding that bulbar onset most frequently starts with speech, followed by swallowing problems. I haven't heard of throat pain connected to it.

Every ALS case is unique, and there is no way to predict how fast or slow bulbar onset will spread to other parts of the body.

As for moving your tongue back and forth quickly: tongue movements do slow down as your speech deteriorates, but it is a gradual process. If you are able to move your tongue really rapidly, your speech would probably still be pretty good. As others have said (Barry in message below) I could not detect my voice slurring ... other people pointed it out to me before I could hear it myself.
So a person notice your sympton before you? at that stage all was normal for you, but other people notice that you were losing speech? correct=?

yes my tongue moves nices. i had fasciculations members and face, mri normal, blood normal except cpk at 3600 has i already said.. but now its all normal... I can move tongue but i feel it vibrating and once in a while fasciculates (moves alone), i eat well and drink water well. chewing gum or menthol candys improve my troaght condicion it help... i had xanax after xanax but when i woke up i have chest pain... hard chest pain... breathing...


How its done bulbar emg? tongue face? head?

regards Jonh
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Old 05-27-2009, 01:53 PM #21 (permalink)
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EMG of the tongue is done differently depending on the examiner. Our original neuro stuck the needle up thru my husband's chin area. Others have stated the examiner stuck the needle into the tongue itself.
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Old 05-27-2009, 02:09 PM #22 (permalink)
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Jonh ...

FIRST ... if you are having hard chest pain and trouble breathing, get to a doctor or an emergency room immediately. Don't wait !

SECOND ... if the chest pain and breathing have improved, still consult with a doctor about it.

To answer your questions: you are correct. Other people noticed my slurring before I did and commented on it, which is when I started to notice it, too. I was aware that I was short of breath and it made speech difficult, but my speech sounded normal to me.

You mention tongue fasiculations, that your tongue "moves," I guess twitches? That's not how ALS fasics worked with me or others I've read about. My tongue didn't move or "twitch." The surface of my tongue was covered with tiny, tiny quivers. I couldn't feel them, but I could see them with a flashlight. Other people have experienced other kinds of movements on the surface of their tongue ... but with ALS as far as I know, the tongue itself doesn't move or twitch.

There are two ways they can do an EMG on the tongue. Both sound horrible, but they are NOT as bad as they sound. They can stick the needle to a spot on the top of your tongue, or they can insert the needle from directly below, behind the jaw bone.

I had it done from below, and I think that is probably the easiest, as the top of the tongue has more nerves (I think). Anyway, it was not as bad an experience as it sounds. It was easier than getting a shot of novacaine.

Take care ... and DO take action about the chest pain and breathing !
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Old 05-27-2009, 04:12 PM #23 (permalink)
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Quote:
Originally Posted by BethU View Post
Jonh ...

FIRST ... if you are having hard chest pain and trouble breathing, get to a doctor or an emergency room immediately. Don't wait !

SECOND ... if the chest pain and breathing have improved, still consult with a doctor about it.

To answer your questions: you are correct. Other people noticed my slurring before I did and commented on it, which is when I started to notice it, too. I was aware that I was short of breath and it made speech difficult, but my speech sounded normal to me.

You mention tongue fasiculations, that your tongue "moves," I guess twitches? That's not how ALS fasics worked with me or others I've read about. My tongue didn't move or "twitch." The surface of my tongue was covered with tiny, tiny quivers. I couldn't feel them, but I could see them with a flashlight. Other people have experienced other kinds of movements on the surface of their tongue ... but with ALS as far as I know, the tongue itself doesn't move or twitch.

There are two ways they can do an EMG on the tongue. Both sound horrible, but they are NOT as bad as they sound. They can stick the needle to a spot on the top of your tongue, or they can insert the needle from directly below, behind the jaw bone.

I had it done from below, and I think that is probably the easiest, as the top of the tongue has more nerves (I think). Anyway, it was not as bad an experience as it sounds. It was easier than getting a shot of novacaine.

Take care ... and DO take action about the chest pain and breathing !
No i will not go more to ER room... chest pain its only after sleeping when i woke up ... and if i go to er. they most have in ER PC hypocondriac or anxiety MRI Normal and Blood with no decease so i,m one normal people with degree and lovely girlfriend that when they dont discover its all anxiety or psyco,,, despite psikiatric send me back to the neuro but i tired of it... i'm not going there.. if it is als there is nothing to do so let me wait... but has i said to doc, i hasnt psicologic elevated my cpk... and he agree but he performe emg to my members and all normal,,, so... lets xanax me ... i have double dose but still no improve... so i dont think thats the way,,, im still working and my bodie all moves tongue feels dying but still moving lips and tong feel it vibration very small one... bur doc didnot performe bulbar emg.... but if the needle is the same... damm it that will hurt... here in portugal there is no als clinic... but i arranged consult to als specialist at 31 july, so till then work work and suffer...

I have also cramps in finguers and calfs... and visible muscles moving in knees foot at face near the lips in mustach area but still no member atrophy,,, I also have belly and back (ass) fasciculations,,, i hate docs... its so more easy saying that i m crazy... i dont have fault that i have 26 years and experience this things... they als laugh "for you only dr house " bla bla... one day they will regret what they are doing to me... because has already said after mri and blood normal and muscle biopsy normal... even my family doesn t belive me.. so i+m on my on... its sad... but i will fight back... still working... and still going... dificulty breathin its major during sleep i
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Old 05-27-2009, 04:39 PM #24 (permalink)
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I am sorry you feel that way!

I understand how frustrating the process can be, but if you are not going to seek help - what can we do?

Sleep with your head elevated and it should help your breathing issues at night.
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Old 05-27-2009, 04:56 PM #25 (permalink)
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Quote:
Originally Posted by joelc View Post
I am sorry you feel that way!

I understand how frustrating the process can be, but if you are not going to seek help - what can we do?

Sleep with your head elevated and it should help your breathing issues at night.
thanks for answering.. yes no one can do nothing... i waiting.... i dont know if it s normal but.. my girlfriend notice that im making alot of noise when sleeping... i wake up with my mouth full open making some noises....
Thanks for the kind words... thanks Joelc and Bethu... But i just can t go to er because first i have to work second i go there they prescribed me more and more xanax even that im overdosing because when sleepin im not suffering... and cramps deseapear only twiches remain...

I will try to sleep with head high but i always like to sleep in horizontal so its hard... to get used to...

This world is wonderfull one year you are one brilliant engeniiring and the other year you are crazy despite of all things are normal in turn of you
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Old 05-27-2009, 05:43 PM #26 (permalink)
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Does anyone take any medication for the pain from cramps? My husband has to restrain himself from laughing as it husrts him around his stomacha area because he cramps up if he laughs too much.
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Old 05-29-2009, 03:35 PM #27 (permalink)
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does bulbar symptons afect ear muscle and eye muscle?
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Old 05-29-2009, 04:31 PM #28 (permalink)
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Jackie: My husband takes low dose Lithium. If he skips a dose, his cramps come back badly. This is a solution that is working pretty well for him. He still gets an occasional cramp here and there though. This may or may not work for your husband.

Everlast: see this explanation of bulbar from wikipedia -

Corticobulbar tract - Wikipedia, the free encyclopedia
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Old 05-29-2009, 04:44 PM #29 (permalink)
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Quote:
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Jackie: My husband takes low dose Lithium. If he skips a dose, his cramps come back badly. This is a solution that is working pretty well for him. He still gets an occasional cramp here and there though. This may or may not work for your husband.

Everlast: see this explanation of bulbar from wikipedia -

http://en.wikipedia.org/wiki/Bulbar
i read it.. so... it afects face hipogloss trygemial nerve etc etc... so my facial and eyelide problems red eye and troagth problems may be cause by this nerves.... and with mri normal
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Old 05-29-2009, 05:43 PM #30 (permalink)
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EMG - you have to have EMG and Nerve Study done. MRI will not help with this if you have ALS. It will only rule out other problems.

please go to the following link form the Neurology Channel and read what it says about the diagnosis process for ALS.

http://www.neurologychannel.com/als/diagnosis.shtml

www dot neurologychannel dot com/als/diagnosis.shtml if the link isn't approved when this posts.
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