- Joined
- Oct 24, 2023
- Messages
- 8
- Reason
- PALS
- Diagnosis
- 10/2023
- Country
- US
- State
- NY
- City
- New York City
Hi Everyone,
I would be grateful for your thoughts on on some symptoms. Long story short, Over the course of the past 6 weeks I was seen at Columbia's ALS center and received a second opinion at the Healy Center at Mass General. The consensus of the doctors at both facilities was to give me a "working" diagnosis of ALS and start me on the 3 FDA approved medications.
I presented with left leg spasticity and clonus and the EMG findings were only in that leg. I received the working diagnosis of ALS once the vast majority of other possible diagnoses were ruled out. There are still a few tests outstanding but not many. I suppose there is a chance this turns out to be something else but I'm now fully enrolled in the ALS multidisciplinary clinic and titrating up the meds etc. At some point I will need another EMG to confirm spread but the docs think it is a bit early for that.
My very first symptoms, even before the leg symptoms, were as follows. A few times each day I would get what I called a "power outage". I would get hot, flushed, and clammy, and very tired. These episodes would last from a few minutes to about an hour. Once I started checking my temperatures I realized that these were frequently accompanied by low grade temps - in the 99s.
These episodes continue every day and appear to be increasing in frequency. I feel quite well when they aren't occuring and quite miserable when they are.
One of my docs says he's seen something like this on very rare occasions and thinks it might be ALS associated autonomic dysfunction. But he isn't sure.
Do you have any wisdom or thoughts about these events?
Thank you in advance and my apologies for the length of this post.
Jeremy
I would be grateful for your thoughts on on some symptoms. Long story short, Over the course of the past 6 weeks I was seen at Columbia's ALS center and received a second opinion at the Healy Center at Mass General. The consensus of the doctors at both facilities was to give me a "working" diagnosis of ALS and start me on the 3 FDA approved medications.
I presented with left leg spasticity and clonus and the EMG findings were only in that leg. I received the working diagnosis of ALS once the vast majority of other possible diagnoses were ruled out. There are still a few tests outstanding but not many. I suppose there is a chance this turns out to be something else but I'm now fully enrolled in the ALS multidisciplinary clinic and titrating up the meds etc. At some point I will need another EMG to confirm spread but the docs think it is a bit early for that.
My very first symptoms, even before the leg symptoms, were as follows. A few times each day I would get what I called a "power outage". I would get hot, flushed, and clammy, and very tired. These episodes would last from a few minutes to about an hour. Once I started checking my temperatures I realized that these were frequently accompanied by low grade temps - in the 99s.
These episodes continue every day and appear to be increasing in frequency. I feel quite well when they aren't occuring and quite miserable when they are.
One of my docs says he's seen something like this on very rare occasions and thinks it might be ALS associated autonomic dysfunction. But he isn't sure.
Do you have any wisdom or thoughts about these events?
Thank you in advance and my apologies for the length of this post.
Jeremy
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