awardsky
New member
- Joined
- Mar 10, 2022
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- MA
- City
- Boston
Hello all,
I've been browsing this forum for a while now and have been in such awe over the community and the support here. Over the past 8 months or so I have been researching and attempting to understand ALS further through this forum as I had developed concerning symptoms last summer.
I mainly wanted to ask a few questions about symptom progression and relation to EMGs and how they are used to diagnose ALS. I feel as though I had some trouble tracking down and truly understanding as I know every case is different.
First off, I am a 30 year old man living in Boston that likes to maintain a relatively healthy and active lifestyle. My symptoms started in July as twitching in my left calf (mainly right below the knee and occasionally above the knee on my thigh) that resulted in some bloodwork (August), an ultrasound (September), a EMG (of my left leg only) in November, and an MRI of my lower back (January). The EMG came back relatively normal with Occasional Fibrillation Potentials in my L. Biceps Femoris. The neurologist noted that it was minimally abnormal with suggestive of mild subacute S1 Radiculopathy. I had seen during my research that ALS can be misdiagnosed as radiculopathy, so I remained concerned.
The MRI of my lower back showed minimal disc tear although not enough to cause the twitching in my calf (per the spine clinic specialist) so they had recently referred me to see another neurologist at MGH.
It is also worth noting that in January my right leg started to experience similar feelings to my left leg although not nearly as frequent. I should also add that the twitching isn't always visible but it is constant when I am at rest and not really noticeable when I am moving or engaging it. This part is also hard to explain but it does feel as though its more like like electrical impulses inside my leg than a visible twitch.
Additionally, I also noticed an odd feeling in my left arm that feels as though there is some sort of tremor deep inside my arm but cannot be seen but has been felt my partner. This has resulted in feelings of my left hand moving slower (which makes sense considering I am right handed) and me being hyper sensitive to the shaky feeling in my left arm during exercise and the inability to flex the muscles in my left arm as easily as my right (almost as if my brain isn't sending the proper signal). I know that was a terrible way to explain that but it's the best I can do.
I know that for an ALS diagnosis there must be clinical weakness (not perceived) and I have tried to keep that in mind through my anxiety of processing everything but I find myself testing the strength of my toes/ankles/calves bilaterally and occasionally feel as though my left side is weaker. It's slowly driving my crazy as I've noticed slight shaking on my left side while doing certain exercises (is this how weakness is initially perceived?) and also have gone to lengths of measuring the size of my calves and arms. My left calf and forearm are objectively smaller than my right side (although not by much), which scares me but I am unable to determine if this has always been the case or if they have been slowly atrophying over the last 8 months.
When I met with the Neurologist last week I had explained all of this to her and she did some strength testing and talked through my fear and anxiety around ALS but seemed confident that it was likely BFS although she'd like for me to go back in 6 months for additional EMGs. I probably could have been more thorough with her about my perceived weakness.
Anyways, I apologize for the long post but wanted to make sure I was properly articulating everything but my main questions are below:
1. What does symptom progression typically look like? I know that it typically spreads locally, but to what extent? Is ALS more likely to slowly deteriorate both upper and lower limbs at the same time, or does it typically result in the loss of one limb prior to moving to another?
2. As far as identifying and pinpointing clinical vs perceived weakness, does weakness slowly creep up (i.e. the shaking while attempting to do something/grip strength slowly getting weaker) or does one day the brain attempt to send a signal and the body part does not respond.
3. As far as understanding EMG results, I was having difficulty understanding the difference between Fibrillations and Fasciculations. I know that Fasciculations are twitches but on an EMG is one always present with the other (i.e fibrillation potentials without fasciculations)? What would typically show on an EMG that would be indicative of ALS? Is there some sort of progression from fibrillation potentials into fasciculations? What type of EMG progression is typically seen for diagnosis and how long between EMGs would be enough time to show any change?
Sorry for asking several questions in each of my points above I am just looking for any sort of guidance/feedback from you all on any of the above if possible. I have been trying not to spiral but it's hard for me to not think about even after meeting with the Neurologist as I feel as though I am in a limbo period waiting for something bad to happen.
Thank you all in advance!
Hi again! Attaching screenshots from my EMG and additional notes from the neurology
I've been browsing this forum for a while now and have been in such awe over the community and the support here. Over the past 8 months or so I have been researching and attempting to understand ALS further through this forum as I had developed concerning symptoms last summer.
I mainly wanted to ask a few questions about symptom progression and relation to EMGs and how they are used to diagnose ALS. I feel as though I had some trouble tracking down and truly understanding as I know every case is different.
First off, I am a 30 year old man living in Boston that likes to maintain a relatively healthy and active lifestyle. My symptoms started in July as twitching in my left calf (mainly right below the knee and occasionally above the knee on my thigh) that resulted in some bloodwork (August), an ultrasound (September), a EMG (of my left leg only) in November, and an MRI of my lower back (January). The EMG came back relatively normal with Occasional Fibrillation Potentials in my L. Biceps Femoris. The neurologist noted that it was minimally abnormal with suggestive of mild subacute S1 Radiculopathy. I had seen during my research that ALS can be misdiagnosed as radiculopathy, so I remained concerned.
The MRI of my lower back showed minimal disc tear although not enough to cause the twitching in my calf (per the spine clinic specialist) so they had recently referred me to see another neurologist at MGH.
It is also worth noting that in January my right leg started to experience similar feelings to my left leg although not nearly as frequent. I should also add that the twitching isn't always visible but it is constant when I am at rest and not really noticeable when I am moving or engaging it. This part is also hard to explain but it does feel as though its more like like electrical impulses inside my leg than a visible twitch.
Additionally, I also noticed an odd feeling in my left arm that feels as though there is some sort of tremor deep inside my arm but cannot be seen but has been felt my partner. This has resulted in feelings of my left hand moving slower (which makes sense considering I am right handed) and me being hyper sensitive to the shaky feeling in my left arm during exercise and the inability to flex the muscles in my left arm as easily as my right (almost as if my brain isn't sending the proper signal). I know that was a terrible way to explain that but it's the best I can do.
I know that for an ALS diagnosis there must be clinical weakness (not perceived) and I have tried to keep that in mind through my anxiety of processing everything but I find myself testing the strength of my toes/ankles/calves bilaterally and occasionally feel as though my left side is weaker. It's slowly driving my crazy as I've noticed slight shaking on my left side while doing certain exercises (is this how weakness is initially perceived?) and also have gone to lengths of measuring the size of my calves and arms. My left calf and forearm are objectively smaller than my right side (although not by much), which scares me but I am unable to determine if this has always been the case or if they have been slowly atrophying over the last 8 months.
When I met with the Neurologist last week I had explained all of this to her and she did some strength testing and talked through my fear and anxiety around ALS but seemed confident that it was likely BFS although she'd like for me to go back in 6 months for additional EMGs. I probably could have been more thorough with her about my perceived weakness.
Anyways, I apologize for the long post but wanted to make sure I was properly articulating everything but my main questions are below:
1. What does symptom progression typically look like? I know that it typically spreads locally, but to what extent? Is ALS more likely to slowly deteriorate both upper and lower limbs at the same time, or does it typically result in the loss of one limb prior to moving to another?
2. As far as identifying and pinpointing clinical vs perceived weakness, does weakness slowly creep up (i.e. the shaking while attempting to do something/grip strength slowly getting weaker) or does one day the brain attempt to send a signal and the body part does not respond.
3. As far as understanding EMG results, I was having difficulty understanding the difference between Fibrillations and Fasciculations. I know that Fasciculations are twitches but on an EMG is one always present with the other (i.e fibrillation potentials without fasciculations)? What would typically show on an EMG that would be indicative of ALS? Is there some sort of progression from fibrillation potentials into fasciculations? What type of EMG progression is typically seen for diagnosis and how long between EMGs would be enough time to show any change?
Sorry for asking several questions in each of my points above I am just looking for any sort of guidance/feedback from you all on any of the above if possible. I have been trying not to spiral but it's hard for me to not think about even after meeting with the Neurologist as I feel as though I am in a limbo period waiting for something bad to happen.
Thank you all in advance!
Hi again! Attaching screenshots from my EMG and additional notes from the neurology
