babyBee
New member
- Joined
- May 15, 2025
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- OH
Hello everyone, thank you so much for letting me in this space and taking the time to read this 
A couple of weeks ago ALS hadn’t even crossed my mind, but things are escalating so quickly now I can’t help but wonder.
Timeline (as best I can remember)
-Over the last year or two: lots of vague neurological symptoms. Got referred to a neurologist but couldn’t get seen until March 2025.
-Early to mid March: my legs start giving out on me when I stand up sometimes. This has never happened before. I then develop recurring twitches in my left foot, but at the time it was just slightly annoying.
-3/28/25: first visit with neurologist. He orders an MRI and an EMG. My symptoms haven’t gotten too bad yet so I’m not that concerned.
-MRI normal except a few small white matter lesions, neurologist thinks MS is unlikely but not ruled out. His office calls me and schedules me for an EMG for 5/15/25.
-Late March throughout April: my whole left leg starts twitching as well. My left leg was often tight/spastic, I couldn’t relax it. Pretty soon both legs twitched. It got more and more frequent and aggressive, it started waking me up at night despite my psychiatrist upping the dose of the prescription sleeping meds I take. They’re starting to drive me crazy, I feel like someone is playing the drums in there. My husband can feel me twitching every night in bed with me.
-At some point I had developed a small left hand tremor, I don’t remember exactly when. I remembered that in November/December 2024 I had wanted to hand make all my gifts, as I love to sew/knit/crochet, but it was very difficult because my hands seemed so clumsy.
-My brain fog worsened throughout all of this. I tried having my adhd meds upped with no success. Now I forget things constantly, even my own thoughts in my head. Conversations are hard to follow. I can’t finish my normal workload in a shift anymore. Yesterday I had the thought to go get my water bottle, and in the 5 ft between me and the bottle, I forgot what I was doing. The bottle was visible the whole time.
-Last week (May 2025): My legs were so spastic by the beginning of the week. I tried to wait it out because I was too busy to deal with it, but it was really getting difficult to walk. My gait had definitely changed. I was very slowly and unbalanced. My husband convinced me to go to urgent care by Thursday.
-The urgent care doc made me go to the ER to get an MRI of my spine. After they made sure it wasn’t anything emergent, I got discharged.
-Friday: still can’t walk much. I call my PCP for a hospital follow up appt, she’s unavailable so they get me in with one of her PAs. The PA says she has no idea but she’ll reach out to my neurologist. His office tells me to just come to my EMG on the 15th as scheduled.
-5/14/25: the neuro office messages me to say there was a mess up with the EMG scheduling and it has to be cancelled. I can reschedule, but there’s no availability until August.
I would normally be okay with waiting but with how fast things have progressed over the past couple weeks, I’m not thrilled about it. Does this even seem like it could be ALS? I don’t really know what to think, but even if it’s not ALS, I really don’t want to live like this until August. It’s getting harder and harder to do my ADLs, but without a dx, it seems like any treatment is far off.
Anyway, if you’ve made it this far, thank you so much! I hope you’re doing well
A couple of weeks ago ALS hadn’t even crossed my mind, but things are escalating so quickly now I can’t help but wonder.
Timeline (as best I can remember)
-Over the last year or two: lots of vague neurological symptoms. Got referred to a neurologist but couldn’t get seen until March 2025.
-Early to mid March: my legs start giving out on me when I stand up sometimes. This has never happened before. I then develop recurring twitches in my left foot, but at the time it was just slightly annoying.
-3/28/25: first visit with neurologist. He orders an MRI and an EMG. My symptoms haven’t gotten too bad yet so I’m not that concerned.
-MRI normal except a few small white matter lesions, neurologist thinks MS is unlikely but not ruled out. His office calls me and schedules me for an EMG for 5/15/25.
-Late March throughout April: my whole left leg starts twitching as well. My left leg was often tight/spastic, I couldn’t relax it. Pretty soon both legs twitched. It got more and more frequent and aggressive, it started waking me up at night despite my psychiatrist upping the dose of the prescription sleeping meds I take. They’re starting to drive me crazy, I feel like someone is playing the drums in there. My husband can feel me twitching every night in bed with me.
-At some point I had developed a small left hand tremor, I don’t remember exactly when. I remembered that in November/December 2024 I had wanted to hand make all my gifts, as I love to sew/knit/crochet, but it was very difficult because my hands seemed so clumsy.
-My brain fog worsened throughout all of this. I tried having my adhd meds upped with no success. Now I forget things constantly, even my own thoughts in my head. Conversations are hard to follow. I can’t finish my normal workload in a shift anymore. Yesterday I had the thought to go get my water bottle, and in the 5 ft between me and the bottle, I forgot what I was doing. The bottle was visible the whole time.
-Last week (May 2025): My legs were so spastic by the beginning of the week. I tried to wait it out because I was too busy to deal with it, but it was really getting difficult to walk. My gait had definitely changed. I was very slowly and unbalanced. My husband convinced me to go to urgent care by Thursday.
-The urgent care doc made me go to the ER to get an MRI of my spine. After they made sure it wasn’t anything emergent, I got discharged.
-Friday: still can’t walk much. I call my PCP for a hospital follow up appt, she’s unavailable so they get me in with one of her PAs. The PA says she has no idea but she’ll reach out to my neurologist. His office tells me to just come to my EMG on the 15th as scheduled.
-5/14/25: the neuro office messages me to say there was a mess up with the EMG scheduling and it has to be cancelled. I can reschedule, but there’s no availability until August.
I would normally be okay with waiting but with how fast things have progressed over the past couple weeks, I’m not thrilled about it. Does this even seem like it could be ALS? I don’t really know what to think, but even if it’s not ALS, I really don’t want to live like this until August. It’s getting harder and harder to do my ADLs, but without a dx, it seems like any treatment is far off.
Anyway, if you’ve made it this far, thank you so much! I hope you’re doing well
