JamieL
Active member
- Joined
- Feb 19, 2013
- Messages
- 51
- Reason
- Loved one DX
- Diagnosis
- 02/2013
- Country
- US
- State
- Texas
- City
- Dallas
Hello. I am by far no expert, and I've only been on this board for one week. After a very long road, my mom finally got a difinitive diagnosis of ALS last Monday. 
It is bulbar onset and exactly as described here. I actually wouldn't say "slurred" speech, it's more like, as my dad says, she has "mush mouth." Now that we know what it is, that makes sense. It is as if all the muscles in her tounge, mouth, neck, etc. have atrophied and cannot "contract" (?) to form words. The big thing I noticed was her lack of ability to project her voice. She has the typical swallowing issues. She can eat solid foods more easily than she can drink water or other thin liquids. So in these ways, NOT like your symptoms. She's been scanned from stem to stern and poked and prodded beyond belief. The only thing not "clean" was her EMG was the only thing showing anything to be "off." Everything else- MRI, blood and urine work, etc. were normal. So if your EMG looked ok, I'd take some solace in that. I was mistaken in that I thought she'd been for sure pegged with "drop foot" since IMO, she does drag her right leg. But apparently it was just viewed as a shuffle type step she has in her gait now and she only drags it slightly when she's very tired and/or in the evening. By day, you'd never know. She hasn't had any limb issue yet and can still move around on her own fine. She's just weak and tired. Anyway, I hope hearing some details about someone with recent, not yet far progressed, bulbar onset ALS can help set your mind at ease. Like everyone else says, I'm no doctor. But I think you should relax until you for sure have something to panic about... and odds seem good that you won't have this to worry about. Good luck!
It is bulbar onset and exactly as described here. I actually wouldn't say "slurred" speech, it's more like, as my dad says, she has "mush mouth." Now that we know what it is, that makes sense. It is as if all the muscles in her tounge, mouth, neck, etc. have atrophied and cannot "contract" (?) to form words. The big thing I noticed was her lack of ability to project her voice. She has the typical swallowing issues. She can eat solid foods more easily than she can drink water or other thin liquids. So in these ways, NOT like your symptoms. She's been scanned from stem to stern and poked and prodded beyond belief. The only thing not "clean" was her EMG was the only thing showing anything to be "off." Everything else- MRI, blood and urine work, etc. were normal. So if your EMG looked ok, I'd take some solace in that. I was mistaken in that I thought she'd been for sure pegged with "drop foot" since IMO, she does drag her right leg. But apparently it was just viewed as a shuffle type step she has in her gait now and she only drags it slightly when she's very tired and/or in the evening. By day, you'd never know. She hasn't had any limb issue yet and can still move around on her own fine. She's just weak and tired. Anyway, I hope hearing some details about someone with recent, not yet far progressed, bulbar onset ALS can help set your mind at ease. Like everyone else says, I'm no doctor. But I think you should relax until you for sure have something to panic about... and odds seem good that you won't have this to worry about. Good luck!
