questions for anyone who has bulbar onset

[Al]

Hey guys, Steve posted this in 2007 and hasn't posted in a few months. He takes a break every once in a while.

AL.

 

[BethU]

Duh! I always forget to check the date.

Well, I hope his breathing issues have improved by now!

 

[Blubear]

I forgot to look at that too!...derka derka!

 

[nmpearce]

hello All, I am new to this forum. I came here hoping for some information. My husband was diagnosed in Fed 2007 with Bulbar onset ALS. At that time he was still eating. today, he can no longer swallow anything at all. he is fed via a peg tube. He has such emormous amount of mucus that is constantly choking him. The excessiveness started a couple of months ago. He has a suction machine to help with it. My question is What does it mean as far as where he is on the progressive scale? I know everyone is different. But when a person gets to this point what can I expect to happen now. He can walk and use his hands, however, his arms are greatly diminished. His speech is terribly garbled and sometimes even I have trouble interpreting it. I know he can use a speech device for that. I am only concerned what this excessive mucus means to where he is in the process. Please help if you can. Thanks.

 

[sesl]

My mother was diagnosed in Sep 2009 (only 5 months ago) and she has had excessive mucus for some time. She drools a lot. There are meds that can help with this but they are not going to get rid of the problem completely.

In terms of where things are at on a "scale" I think it is more important to consider where the lung function is at than the mucus. Most bulbar patients die due to lung problems - respiratory failure due to pneumonia or some other cause.

So if the lungs are still functioning strongly then you are probably not in bad shape at this point - ugly, but functioning well KWIM.

You might consider reading "Tuesdays with Morrie" which describes the progression of ALS is Morrie Schwartz. The early parts of the book are not so relevant to bulbar patients, but once Morrie "goes bulbar" you get a good sense of what the progression might be like.

sesl

 

[MaxwellMurder]

after having two emgs my left leg and arm, then my left leg, arm, and back. i never want that thing near my face or in my mouth. i have had my lip pierced and nippel, h** i have split the hold side my face open on a tree while snowboarding and went blind for 3 min. but i fear the day a doc wants to emg my mouth.

 

[MossRose]

Do you have to have an EMG and Nerve test of your tongue and check to determine Bulbar or will tests done on your leg and arms be sufficient?

 

[MossRose]

I posted my first question regarding bulbar emgs and see in other posts similar questions. Since my original question I now have numbness on the left side of my face, my throat is very sore and my tongue never knows where to lay. I had another round of EMG's at the U of Minnesota, they did the leftside from toe to shoulder and one of my tongue from under the chin. I am satisfied with the EMG on the truck of my body but I am very concerned about the face and tongue. I only had the test done and have not met with the neurologist yet but in anyone's opinion does this seem incomplete?

 

[handinhand]

Hi MossRose, I am sorry that you have had to find your way here. We are here to help u with any questions or problems you may have. We truly understand what you are going through right now.. I have Bulbar also, and I feel lots of twitchs on my face and neck.. It is kinda scary but it has been a year and I still feel pretty darn good. Big Hugs to you today, Linda

 

[MossRose]

The twitches aren't so bad but the numbness is driving me crazy. Anyway I have a follow-up on May 5th so I will wait until then. I was just wondering about the one test for the bulbar area - thought that was a little light. Thanks handinhand for answering.