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.