smithp38
New member
- Joined
- Dec 28, 2022
- Messages
- 2
- Reason
- Loved one DX
- Diagnosis
- 12/2022
- Country
- US
- State
- GA
- City
- Atlanta
Would like y'all's input. Not sure if I'm just in denial or if this could be a false positive. Yes, we are working on getting a second (or actually, third) opinion.
Long story short: my mom was diagnosed with ALS "officially" on Dec 23. She's still walking. Sometimes without a cane! I think she can even still stand on just her weak leg as long as she has something to hold onto. That does not sound like the other stories I have read here, including the 'read first' post.
First symptom was all over twitching - head to toe - starting in July of this year. She says her tongue twitches but it's akin to an eye twitch - not the 'wriggling worm' type twitching I've read about. Weakness started a few months ago. Definitely has foot drop but hip still works and obviously the rest of her leg still somewhat works or else she wouldn't be able to walk. No weakness (yet) in arms or other leg but she does get tired more quickly than she used to.
First neurologist (not an ALS specialist) thought it was all in her head and said her EMG came back clean. He sounded like kind of a jerk. Had brain MRI which showed nothing. She then went a saw an ALS specialist who took a ton of blood, tested for everything (found nothing), did another EMG, which came back dirty. She has a spine MRI tomorrow.
From what I've read, it seems like there are a few things that maybe sound more like MMN than ALS? The all over twitching (which is still happening), rather than localized twitching, and the lack of total muscle failure. I'm very confused on the progression thing though: a lot of stories you read, it seems like the muscle failure is very sudden; but were there really no signs before that? Was that just the culmination of progressing weakness? So I can't tell if hers is moving at a normal rate or if it's much slower?
Would love your thoughts. Thank you for your compassion. xoxo
Long story short: my mom was diagnosed with ALS "officially" on Dec 23. She's still walking. Sometimes without a cane! I think she can even still stand on just her weak leg as long as she has something to hold onto. That does not sound like the other stories I have read here, including the 'read first' post.
First symptom was all over twitching - head to toe - starting in July of this year. She says her tongue twitches but it's akin to an eye twitch - not the 'wriggling worm' type twitching I've read about. Weakness started a few months ago. Definitely has foot drop but hip still works and obviously the rest of her leg still somewhat works or else she wouldn't be able to walk. No weakness (yet) in arms or other leg but she does get tired more quickly than she used to.
First neurologist (not an ALS specialist) thought it was all in her head and said her EMG came back clean. He sounded like kind of a jerk. Had brain MRI which showed nothing. She then went a saw an ALS specialist who took a ton of blood, tested for everything (found nothing), did another EMG, which came back dirty. She has a spine MRI tomorrow.
From what I've read, it seems like there are a few things that maybe sound more like MMN than ALS? The all over twitching (which is still happening), rather than localized twitching, and the lack of total muscle failure. I'm very confused on the progression thing though: a lot of stories you read, it seems like the muscle failure is very sudden; but were there really no signs before that? Was that just the culmination of progressing weakness? So I can't tell if hers is moving at a normal rate or if it's much slower?
Would love your thoughts. Thank you for your compassion. xoxo