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stevef

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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

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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

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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

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Sep 12, 2006
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PALS
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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

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Apr 10, 2007
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Ottawa
Bulbar ALS

Hey Steve

My husband was diagnosed 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

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Feb 27, 2007
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67
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Loved one DX
Diagnosis
03/2007
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US
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OK
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Guthrie
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

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more question

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

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Mar 24, 2007
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113
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CALS
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Illinois
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Olympia Fields
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

Very helpful member
Joined
Sep 18, 2006
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Diagnosis
7/1999
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newjersey
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lopatcong NJ
stevef said:
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 :-(
 

alice rehm

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Joined
Dec 29, 2009
Messages
1
Reason
PALS
Diagnosis
06/2007
Country
US
State
texas
City
san antonio
hi- i have als and progressive bulbar palsy-- the symptoms started in december of '06--- i was not diagnosed until june 2007---had 3 emg's-- among other physical exams and such--- My Question is: If people diagnosed with bulbar onset w/ALS have a shorter time to live, why am I still alive? I don't understand. I've read that people with bulbar onset & ALS live between 18 months and 3 years. My boyfriend doesn't belive I have ALS even though I've shown him the diagnoses. I get absolutely no support from him. He constantly asks me why I'm not as energetic as other women in their 40's. It did no good trying to explain anything to him. I'm expected to act completely normal with all my family except my mom.

Anyway, I would like to know why I'm not worse off by now.
Thank you
 

indigosd

Very helpful member
Joined
Jun 22, 2009
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1,784
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Lost a loved one
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07/2009
Country
oz
State
oz
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RURAL
hi Alice, WELCOME to the forum. My husband was diagnosed on 13 July 2009 with bulbar Onset. He is declining rapidly. PEG done on 15 Dec 09. I am sooooo grateful that you are having a slow progression!
 

BarryG

Extremely helpful member
Joined
Nov 19, 2008
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Diagnosis
02/2008
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CA
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Alberta
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Hinton
Alice, welcome to the forum! When they say 18 months to 3 years that is an average and in averages there are always things called outliers. And you are one, which in this case is a good thing! An outlier is something that doesnt fit into the usual statistical curve. Also, as we have discussed here before averages and statistics can be misleading and also need to be updated as we live longer.

I was diagnosed with bulbar onset ALS in January of 2008 and my speech and swallowing are almost gone now but I can still walk and use my hands so I look to your slow progression as a blessing not something to be questioned. Personally, I think you need a new boyfriend, if he wont support you what good is he? But that is just my opinion!

All the best to you and if we can help answer any questions just ask away.

Barry
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
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PALS
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05/2008
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US
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California
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Los Angeles
Stevef ... if your problems are breathing and sleeping, I would suggest you see a regular doctor. Breathing problems, especially when lying down, can be a sign of heart disease and/or sleep apnea.

Bulbar ALS usually starts with slurred speech, and it would definitely show up in an EMG of your tongue and cheeks. Breathing issues are not a bulbar ALS symptom ... they stem from the lungs, heart or diaphragm, not the bulbar (head) region.

None of us are doctors; you need to see a doctor to find out what is behind your breathing problems. You don't need to ask the doctor to perform certain tests ... he or she will tell you what kind of tests are needed to diagnose you.
 

Blubear

Senior member
Joined
Oct 24, 2009
Messages
941
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Lost a loved one
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09/2009
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US
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Wa.
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Puyallup
Hi Steve...My dad has Bulbar onset. His first symptoms were facial droop and slurring of speech. He was also having problems sleeping and was at the time diagnosed with sleep apnea and given a bi-pap which has helped him considerably. (the muscle in the back of his throat had weakened and was causing him to choke all the time while he slept) He has no swallowing or excess saliva issues yet. Bulpar is "typically" the faster progression of the disease, but if you read through this forum, and the other mountains of information out there, everyone is different. I look at the fast progression of Kay Marie's husband as opposed to my dad and there is a huge difference. Not everything is set in stone. Alice....Welcome to the forum! As far as the family and lack of support, ...to deny anything is wrong is easier, and it is human nature as well. Not saying that this is right, but some people just react that way. I know how you feel, except my disease is not life threatening. I have fibromyalgia, (pain you cannot see) and a load of arthritis and herniated dics in my back. I had to sell my business after 17 years and go on disability. (back to work part time now thanks to a wonderful doc) Anyway, my dad (who now has ALS) wouldn't look at any of my MRI proof, or doctors letters etc...it was just "You are fine, get back to work". I still have problems with my daughter understanding my problems, and she wont even listen to anything that has to do with her grandpa and ALS. She refuses to make an extra effort to see him or call him because that is not the way it is "normally". She said at xmas that he looked and sounded fine and doesnt know what all the fuss is about. She said she doesn't want to hear of any new symptoms unless it is life threatening. (Urg!)It's denial. It is how she is wired. I just want to shake her and tell her to WAKE UP! But it is to no avail. (sigh)...Just like this damn disease, everyone and how they handle it is different.
Hugs,
Blubear[/B][/B]
 

brooksea

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Sep 27, 2006
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Other
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HM
Hey Alice! My husband started having noticeable problems in 2005 and was diagnosed with Bulbar ALS in Sept of 2006. He still eats, but it has become problematic (Peg next month) and his speech is very difficult to understand. He's still walking but has balance issues (PWC on order). We were told 2-5 years. His breathing is still good, so I look to see him go beyond the statistics that the docs throw out.

As for your boyfriend - He will eventually have to wake up and smell the coffee. If he can't handle it now, he certainly won't later.
 
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