Progressive Bulbar Palsy? ALS?

My mom started having bulbar symptoms around summer of 2009. Finally, she was send to UVA in Charlottesville Va and was diagnosed with Progressive Bulbar Palsy in January 2010. We were told by many people that this is ALS, or a form of ALS. However, as of now, the doctors do not have her diagnosed with ALS. Mom started with headaches, neck pain, slurred speech, difficulty breathing, etc. She has almost completely lost her ability to speak. She gets choked all the time, and now eats only soft foods such as applesauce, ice cream, mashed potatoes, etc. She chokes at night on her own saliva. Her muscles are starting to get weak now, she has started loosing her balance and falling. Muscle twitches have started.

Right now I am really frustrated because mom needs help from the ALS Association with assistive equipment, etc. However, because she doesn't have an official ALS diagnosis... there is nothing they can do to help her. They haven't given her the diagnosis because she continues to get negative EMG's. This is so frustration.

Is it ALS, is it not? Can anyone help us?

Someone please help my momma.

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That is the type my brother had. He passed away almost three years ago.
Anyways get in there and fight for your mom. She deserves everything she can get to help with this terrible disease.
Any questions email me directly Smilef@aol.com

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Hey fighting4!! Hang in there! If it was me, instead of waiting to see if MDA/ALS will change their mind and give your Mom a diagnosis of ALS, ask them if this falls under one of the other neuro-muscular diseases also covered by MDA. I don't really know if it is or not, but I wouldn't wait around for a new diagnosis that may never come.
The muscle spasms and twitching....my wife's ALS started as bulbar onset...she had most if not all of the same issues you've stated, with one exception...when they performed the EMG test on her "tongue muscles", then tested other muscle groups and areas , that "sonar" machine lit up and you almost couldn't speak over the noise the muscles made. Since the EMG testing is such an essential diagnostic tool when it comes to an ALS diagnosis, I doubt the MDA will change their mind on the diagnosis.
But your Mom does have a diagnosis of "progressive bulbar palsy", and I would look into what avenues of support there are for this...if for no other reason than you could spend several months, maybe even years attempting to get MDA to reverse or declare her diagnosed with ALS and it may never come about. If it was me, I would work with what I knew and had. You didn't mention health insurance or if your mom was medicare/medicaid eligible, but these are additional resources. Was she a veteran? Might be something there to look into for support. I'm only saying work with what you know and see what is available. We'll get your mom on the prayer list and who knows, maybe you'll be paving the way for others just like your mom....Mike

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Hello Mike. Thanks for your response. It doesn't matter anymore. We took mom to uva on Monday and this emg came back positive immediately! :( and she has went down hill so much in the last week. Her lung function is 65%. We are working with ALS association now to get her help a.s.a.p. we are also working on the medicare/medicaid issues. Everything just happening so fast!!!

Thank you for Your concerns

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I don't whether to tell that's good or bad!! It's good that your mom can get the support, etc, and yet it's bad because everyone knows the prognosis with ALS..since she appears to have Bulbar Onset from the symptoms you've stated, I can tell ya' it's probably already into her diaphragm as well. We'll keep her on the prayer list..I know at least some of what you'll go through...don't know if you're the primary caregiver or not, but if so, you're in for a quite a journey...If not, try to stay as involved as you can...that 2 or 3 hour break can mean a great deal to the primary caregiver. And yes, this disease progresses fast, or at least it seems like it, once you get that diagnosis..I believe it's a plateau type disease...it gets very active, takes away more function and then the person seems to level out for awhile...then all of a sudden, new issues pop up and you're jerked into another area....even though my wife is now totally incapaciated, hasn't spoken in 2 yrs now or anything, you would think there's not much else..then boom, stuff like biting the tongue involuntarily or suddenly having issues absorbing food...You hang in there!! we're here to lend that ear!! mike

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Hey fighter sorry to hear about your mom however I want to let you know als association are usually pretty good about helping you get equipment fast. I have a question about emg when u say it came back neg/pos what did u mean? Keep up the fight its hard but worth it every minute guarantee it,

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