AMAMP
New member
- Joined
- Apr 3, 2021
- Messages
- 8
- Reason
- Loved one DX
- Diagnosis
- 00/0000
- Country
- US
- State
- CA
- City
- Orange
Hi all, I’m posting because I’m very concerned about my mom. I have no way of speaking with her doctors and she/my dad don’t seem to ask any of the important questions! (Frustrating) So I’m turning to all of your knowledge and experience to get some clarification.
7 months ago from today (09-03-2020) my mom (age 68) began having constant twitching and spasms in her mouth (lips and tongue) and jaw/cheek area.. it immediately made her speech slurred and weak. Since then her speech has progressively become worse along with her coughing while drinking or eating. Also, she has excessive drooling and saliva.. she always has a napkin with her to wipe her mouth. She has since seen SEVERAL doctors, neurologists, ents, speech therapist etc. none of them know how to help her. Her speech is very low in pitch, slow and monotone.. not nasally. She makes an EXTREME effort to form words and is now at a point where most of her words are unrecognizable. She eats so slowly and has no appetite...a couple times she has choked and my dad has had to heimlich her... she has lost 20 lbs.
Here’s the thing.. SHE HAS NO OTHER WEAKNESS in her body. She just checked into the ER, was admitted and they did an MRI, Brainstem MRI and an EMG.. all were clear. They told her she doesn’t have ALS. However the dr told my dad separately out in the hallway at the hospital that BULBAR PALSY is not off the table, so to speak.. why is that the case when her EMT was clear. I keep reading (from knowledgeable people) on these threads that a clear EMT MEANS NO ALS.. is there an acception for bulbar ALS?
My mom has an appt with yet another neurologist on April 29, 2021 to possibly have another EMG (again, why? if first one was clean and clean = ALS free) .. I guess I’m asking for your thoughts on her first EMG.. they tested her arms, legs and under her chin into her tongue... and all all was normal a could she really still have ALS? I guess I’m in disbelief because of all the stories on this forum where people had one or two clean EMGs before being diagnosed with bulbar ALS. Thank you for any knowledge you could pass along.
Also! I meant to add that everything else seems to have been ruled out.. all the other things that go along with this process.. nothing was a match for her.
7 months ago from today (09-03-2020) my mom (age 68) began having constant twitching and spasms in her mouth (lips and tongue) and jaw/cheek area.. it immediately made her speech slurred and weak. Since then her speech has progressively become worse along with her coughing while drinking or eating. Also, she has excessive drooling and saliva.. she always has a napkin with her to wipe her mouth. She has since seen SEVERAL doctors, neurologists, ents, speech therapist etc. none of them know how to help her. Her speech is very low in pitch, slow and monotone.. not nasally. She makes an EXTREME effort to form words and is now at a point where most of her words are unrecognizable. She eats so slowly and has no appetite...a couple times she has choked and my dad has had to heimlich her... she has lost 20 lbs.
Here’s the thing.. SHE HAS NO OTHER WEAKNESS in her body. She just checked into the ER, was admitted and they did an MRI, Brainstem MRI and an EMG.. all were clear. They told her she doesn’t have ALS. However the dr told my dad separately out in the hallway at the hospital that BULBAR PALSY is not off the table, so to speak.. why is that the case when her EMT was clear. I keep reading (from knowledgeable people) on these threads that a clear EMT MEANS NO ALS.. is there an acception for bulbar ALS?
My mom has an appt with yet another neurologist on April 29, 2021 to possibly have another EMG (again, why? if first one was clean and clean = ALS free) .. I guess I’m asking for your thoughts on her first EMG.. they tested her arms, legs and under her chin into her tongue... and all all was normal a could she really still have ALS? I guess I’m in disbelief because of all the stories on this forum where people had one or two clean EMGs before being diagnosed with bulbar ALS. Thank you for any knowledge you could pass along.
Also! I meant to add that everything else seems to have been ruled out.. all the other things that go along with this process.. nothing was a match for her.