- Joined
- Jul 29, 2017
- Messages
- 3,933
- Reason
- PALS
- Diagnosis
- 07/2017
- Country
- US
- State
- OR
- City
- Southern Oregon
I’m wondering if any other PALS have experienced this or know if it’s part of ALS —
My presenting “failure” with ALS was left foot drop. However, about 3-4 years prior to that foot drop, I noticed an odd sensation in the same foot — not exactly a pain, and not a numbness, but more like a “dead” sensation, as if there was impaired circulation to that foot. I’m calling it “dysesthesia” to distinguish it from anesthesia (no sensation) or paresthesia (numbness).
I initially noticed it infrequently, mostly while seated, and I always felt the need to stand up and move my foot when it occurred. It did not occur at night initially. I wondered about neuropathy, but dismissed the idea due to absence of pain or numbness. Incidentally an MRI of my back last year ruled out any nerve root compression. And I’ll add my circulation has always been excellent and the foot has good color.
Since being diagnosed with ALS, I have noticed this odd sensation more frequently, now especially at night. It is rather uncomfortable and particularly annoying since I have little movement remaining in that foot or ankle and can’t seem to relieve the sensation. I sometimes get a similar sensation in other areas where I have had involvement with ALS.
So now I’m wondering if it is from spasticity associated with ALS or perhaps some variant of restless leg syndrome. It mainly occurs in the one leg even though both my legs are weak from ALS.
I’ll talk to my neurologist about it in a few weeks, but I thought I’d ask here first. Thoughts?
My presenting “failure” with ALS was left foot drop. However, about 3-4 years prior to that foot drop, I noticed an odd sensation in the same foot — not exactly a pain, and not a numbness, but more like a “dead” sensation, as if there was impaired circulation to that foot. I’m calling it “dysesthesia” to distinguish it from anesthesia (no sensation) or paresthesia (numbness).
I initially noticed it infrequently, mostly while seated, and I always felt the need to stand up and move my foot when it occurred. It did not occur at night initially. I wondered about neuropathy, but dismissed the idea due to absence of pain or numbness. Incidentally an MRI of my back last year ruled out any nerve root compression. And I’ll add my circulation has always been excellent and the foot has good color.
Since being diagnosed with ALS, I have noticed this odd sensation more frequently, now especially at night. It is rather uncomfortable and particularly annoying since I have little movement remaining in that foot or ankle and can’t seem to relieve the sensation. I sometimes get a similar sensation in other areas where I have had involvement with ALS.
So now I’m wondering if it is from spasticity associated with ALS or perhaps some variant of restless leg syndrome. It mainly occurs in the one leg even though both my legs are weak from ALS.
I’ll talk to my neurologist about it in a few weeks, but I thought I’d ask here first. Thoughts?