bblue
New member
- Joined
- Feb 29, 2020
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CA
- City
- Mountain View
Hi all,
Hope that you are staying safe in spite of the pandemic. I've had a worrying progression of symptoms, and I'd like to ask for your advice on what to do next.
Around December last year, I started to feel that my right leg wasn't responding as well as before and was harder to lift. I was a pretty athletic guy before these symptoms started, and it was obvious (to me) that something was wrong. My PCP referred me to a neurologist, and I had my first appointment, where my reflexes were checked and no abnormalities were found. The neurologist ordered a NCV study just to be on the safe side, which came back clear.
In January, the fasciculations and muscle twitches started. First, I had some isolated events: a sudden twinge at the side of my throat; the muscle between my thumb and index finger suddenly contracting, then returning back to its previous position; a sensation of inner 'vibration' or tremor when lying on my back. By February, a phase of intense fasciculations started; I have been having fasciculations literally everywhere on my body, on my calves, legs, back, hands, arms, shoulders, cheek, neck..., and occurring throughout the day/night with no real period of remission. I have had muscle twitches that send my feet shooting out, or make my wrist twitch as if moved by a string puppet. It's really disturbing my days and nights and it's still happening today.
I also started noticing other changes to my general health in the past 6 weeks. I get tired walking up a flight of stairs, and after that my legs are burning as if I'd been walking for miles. I can't climb at all anymore, which used to be my favorite hobby. I have unexplained back pain, and I am straining to fully stretch out my hands. I notice that a lot of my muscle bulk has gone (I don't know if I should call it 'atrophy' - not sure if I can judge this accurately myself without taking detailed progress photos, which I haven't been taking).
More recently, I have issues with salivating like crazy, and I can feel water going slowly down my throat, and liquids getting stuck up my throat. Speech has become strained, but not to the point that other people notice; I'm usually not much of a talker in the first place. My PCP has offered to do a swallow study, but suggests that I do so only if I find that I'm really choking on food. My reaction reflexes (when I bang into something or when I am surprised) are also ridiculous and unusually strong,
So far, I have had no clinical weakness that can be detected at the neurological exam. I start from a pretty strong baseline so while I feel like I have lost some significant amount of strength, there's nothing that a neurologist can write home about.
My first neurologist did an NCV, spine/head MRI, and didn't find anything amiss. After the fasciculations started, I got a referral for a second opinion with a neuromuscular specialist, who requested another head MRI, a spinal tap, and performed an EMG on my right foot, leg and right arm.
Every test so far has come back negative, including the EMG. However, we did the EMG before the crazy fasciculations really started; back then, I didn't have the continuous twitching and fasciculations, they started 2 weeks after the EMG.
My neuro doesn't think that this could be ALS, based on the negative EMG. This doesn't take my symptoms away, unfortunately. The twitching and perceived atrophy and weakness, and more recently the throat issues seem to point in the direction of ALS, which I really don't want to have. Is it possible that the EMG I had can fail to detect ALS at all, or is that just really really unlikely? Are there other tests that can help determine if it's ALS, other than waiting for my body to get worse (or better)? And are there any other diseases that can mimic the symptoms I'm getting? (from my research, fasciculations + atrophy seems to point to the direction of motor neuron diseases). My neuro seems really good and reliable, although he's not an ALS specialist.
Any advice or help is appreciated. Thank you very much.
Hope that you are staying safe in spite of the pandemic. I've had a worrying progression of symptoms, and I'd like to ask for your advice on what to do next.
Around December last year, I started to feel that my right leg wasn't responding as well as before and was harder to lift. I was a pretty athletic guy before these symptoms started, and it was obvious (to me) that something was wrong. My PCP referred me to a neurologist, and I had my first appointment, where my reflexes were checked and no abnormalities were found. The neurologist ordered a NCV study just to be on the safe side, which came back clear.
In January, the fasciculations and muscle twitches started. First, I had some isolated events: a sudden twinge at the side of my throat; the muscle between my thumb and index finger suddenly contracting, then returning back to its previous position; a sensation of inner 'vibration' or tremor when lying on my back. By February, a phase of intense fasciculations started; I have been having fasciculations literally everywhere on my body, on my calves, legs, back, hands, arms, shoulders, cheek, neck..., and occurring throughout the day/night with no real period of remission. I have had muscle twitches that send my feet shooting out, or make my wrist twitch as if moved by a string puppet. It's really disturbing my days and nights and it's still happening today.
I also started noticing other changes to my general health in the past 6 weeks. I get tired walking up a flight of stairs, and after that my legs are burning as if I'd been walking for miles. I can't climb at all anymore, which used to be my favorite hobby. I have unexplained back pain, and I am straining to fully stretch out my hands. I notice that a lot of my muscle bulk has gone (I don't know if I should call it 'atrophy' - not sure if I can judge this accurately myself without taking detailed progress photos, which I haven't been taking).
More recently, I have issues with salivating like crazy, and I can feel water going slowly down my throat, and liquids getting stuck up my throat. Speech has become strained, but not to the point that other people notice; I'm usually not much of a talker in the first place. My PCP has offered to do a swallow study, but suggests that I do so only if I find that I'm really choking on food. My reaction reflexes (when I bang into something or when I am surprised) are also ridiculous and unusually strong,
So far, I have had no clinical weakness that can be detected at the neurological exam. I start from a pretty strong baseline so while I feel like I have lost some significant amount of strength, there's nothing that a neurologist can write home about.
My first neurologist did an NCV, spine/head MRI, and didn't find anything amiss. After the fasciculations started, I got a referral for a second opinion with a neuromuscular specialist, who requested another head MRI, a spinal tap, and performed an EMG on my right foot, leg and right arm.
Every test so far has come back negative, including the EMG. However, we did the EMG before the crazy fasciculations really started; back then, I didn't have the continuous twitching and fasciculations, they started 2 weeks after the EMG.
My neuro doesn't think that this could be ALS, based on the negative EMG. This doesn't take my symptoms away, unfortunately. The twitching and perceived atrophy and weakness, and more recently the throat issues seem to point in the direction of ALS, which I really don't want to have. Is it possible that the EMG I had can fail to detect ALS at all, or is that just really really unlikely? Are there other tests that can help determine if it's ALS, other than waiting for my body to get worse (or better)? And are there any other diseases that can mimic the symptoms I'm getting? (from my research, fasciculations + atrophy seems to point to the direction of motor neuron diseases). My neuro seems really good and reliable, although he's not an ALS specialist.
Any advice or help is appreciated. Thank you very much.
