panicbutton42
New member
- Joined
- Aug 17, 2020
- Messages
- 3
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- US
- State
- IL
- City
- Chicago
First off, I want to thank anyone that takes the time to respond to this. I know that many here have to put an immense amount of effort to respond to posts and I sincerely appreciate any time put in to respond to my (admittedly anxious) inquiry.
Quick history, I started having right sided weakness and pain (both arm and leg) about four months ago. The weakness was undoubtedly exacerbated with exertion but tended to wax and wane. So far, despite remitting, after an "episode" I never feel as normal as I did prior.
My neuro ran the gamut of non invasive tests, blood panels, MRIs, CT scan, eventually suspecting that I had Lambert Eaton Myasthenic Syndrome after a suspicious antibody test. However after a repeat test from Mayo Clinic came back negative, she ruled out LEMS and scheduled me for an EMG to investigate further. It's scheduled for the 25th.
In recent weeks, I've started to notice a chronic hoarseness to my voice along with a constant "lump" in the throat. I've also started having issues with nasal regurgitation.
While I know that it would be considered atypical for weakness to come and go with ALS, and then for symptoms to sporadically "jump" from my right limbs to my bulbar region, I've also found clinical reports about incredibly odd manifestations. My neuro hasn't given me much to work with, just that the EMG will provide some information.
Can anyone tell me if bizzaro presentations like this exist in the common knowledge?
I'm 31 and there's obviously something wonky going on. I'm just racking my brain trying to get any reliable information.
Again, massive thanks to anyone who takes the time to respond to this, I sincerely appreciate any info that Im able to glean from this incredible community.
Quick history, I started having right sided weakness and pain (both arm and leg) about four months ago. The weakness was undoubtedly exacerbated with exertion but tended to wax and wane. So far, despite remitting, after an "episode" I never feel as normal as I did prior.
My neuro ran the gamut of non invasive tests, blood panels, MRIs, CT scan, eventually suspecting that I had Lambert Eaton Myasthenic Syndrome after a suspicious antibody test. However after a repeat test from Mayo Clinic came back negative, she ruled out LEMS and scheduled me for an EMG to investigate further. It's scheduled for the 25th.
In recent weeks, I've started to notice a chronic hoarseness to my voice along with a constant "lump" in the throat. I've also started having issues with nasal regurgitation.
While I know that it would be considered atypical for weakness to come and go with ALS, and then for symptoms to sporadically "jump" from my right limbs to my bulbar region, I've also found clinical reports about incredibly odd manifestations. My neuro hasn't given me much to work with, just that the EMG will provide some information.
Can anyone tell me if bizzaro presentations like this exist in the common knowledge?
I'm 31 and there's obviously something wonky going on. I'm just racking my brain trying to get any reliable information.
Again, massive thanks to anyone who takes the time to respond to this, I sincerely appreciate any info that Im able to glean from this incredible community.