questions for anyone who has bulbar onset

[stevef]

i had an emg and the test were good nothing showed any sign of als or so they said that. my main concern is it might be bulbar als and not sure how the emg would show or not show signs of bulbar als. they did one of my tounge my cheak area and nothing showed. my concern is my evening and morning breathing and caughing. should i ask for a breathing test or a sleep test to see. do bulbar als show first with breathing at night because you are more at rest. still hopeful this is something else but my mind is racing especially after what happened with chad moving so fast. i am still hopeing this is MG or MS

[ltr]

Hi Steve,

I have not been diagnosed with als, but from what I have learned, the EMG you had of your tongue and cheek would have been abnormal if you had bulbar onset ALS. Especially since you are having symptoms in that area. I know it's frustrating and even scary to have the symptoms, but I think you should try to be happy that the EMG was clean. Another forum member with those symptoms turned out to have Lyme, have you been tested for it? And also, sometimes one form of the test may be negative, but another may be positive. Do you live in an area where there is cases of Lyme (I guess it can be anywhere, but some places are more dominant). I hope things get better for you soon. Leslie

[stevef]

i am still so scared. trouble at night breathing while sleeping and while walking around today yawning alot. i want to take the word of the doctor since he is someone who worked at the mayo clinic in minn and is at mass general hospital now. if it is not bulbar als then what else can cause these symptoms. i am praying and praying for this to go away or get better but maybe it is anixity.

[Rhonda]

Hi Stevef, Try to relax, I have bulbar and limb onset and the emg of tongue was not good. Honestly I don't know which happened first it seemed to have started with 2 of my right fingers and then my speech starting slurring. Thank God your emg was good.
Try to see your Dr. about the breathing issues, I would try to find some peace, stress is the worst thing for you no matter what you have. We all have been where you are and we know about fearing the unknown, you have alot to be thankful for with the clean emg. I tell you this as a friend. Take care of yourself. Rhonda

[Laurie Lister]

Hey Steve

My husband was dx with bulbar in October of 2005. I can tell you what his symptoms were. It didn't affect his breathing right away the first thing to change was his voice, it got nasally sounding, and some trouble swallowing. Hope this helps.

My prayers are with you.
Laurie Lister

[nsmith555]

Hi Steve,
My mom was diagnosed w/Bulbar ALS last month. Her symptoms started over a year ago with voice changes, then swallowing difficulties. Her tongue has visible fasciculations. Her breathing problems didn't really become a problem until the last couple of months. Hope that helps...here's hoping you don't have ALS in any form!
God Bless,
Nicki

[stevef]

when it comes to swallowing trouble is it more a first with big food pieces or small pieces. it seems especially hard for tiny bites and also dry type of food for me. does that sound like a bulbar sign. also i read clearing thoart can be a sign but is it clearing a dry thoart of more with silva down there. i am so scared about thisgod please no als.

[nspoc]

Hi Steve -

VERY sorry about your worries. My experience with the people in my support group who have swallowing difficulties is that thin liquids are the worst. Starting with saliva, water, etc. Thus the use of thickeners to help. I do not know about large vs. small chunks of solid food, except that I know my fellow members do cut their food very small, and eventually put it in a blender. I understood it as inability to chew well, as opposed to swallowing, per se.

I also experienced our bulbar onset PALS as having excess saliva, not dryness.

In the past I had panic attacks (associated with GERD, of all things) - this resulted in trouble swallowing dry, solid food. I needed water to get it down. Thankfully this has been resolved for many years - but anyway, anxiety definitely results in dry mouth, and frequently in swallowing difficulties. Are you being treated for anxiety? I hate to see you suffer like this, it just adds more pain to a painful situation.

If your tongue and cheek emg are clear, then something else is accounting for your symptoms. Could be so many things, many of which are perfectly treatable.

I would hate to provide false comfort, but dry difficulties in swallowing do not seem associated with the ALS I have been familiar with for the past 4 years.

I hope you find peace, and a diagnosis that will provide you comfort, and an effective treatment path!

Good Luck - Beth

[patricia1]

when it comes to swallowing trouble is it more a first with big food pieces or small pieces. it seems especially hard for tiny bites and also dry type of food for me. does that sound like a bulbar sign. also i read clearing thoart can be a sign but is it clearing a dry thoart of more with silva down there. i am so scared about thisgod please no als.
Steve time is what the doctor need they wait to see if you progress and how and what you get new there is no real test for als Even a clean emg doesnt mean you dont have als it elimates other things so they can rule als in :-(