Simba
New member
- Joined
- Jun 30, 2021
- Messages
- 6
- Reason
- Learn about ALS
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- 00/0000
- Country
- CA
- State
- BC
- City
- Port Moody
Hi everyone, I apologize to add another to the ‘Could I have ALS?’ pile. I’ve read the sticky notes here, and after reading many threads here over the past couple weeks, I figured it was time to ask here. I'm a male, and 38 years old.
About 3 weeks ago on the 20th of June I went on my regular weekend bike ride, which is a few hours, and about 15 miles. It had been a stressful week and even on the ride I was unable to push the stress out of my mind, and once I finished the ride and returned home, and then went to bed that night, I had fasciculations all over my body. It was something I’ve never experienced before. All night I laid there, unable to sleep for even a minute, as muscles twitched over every inch of my body. Every couple seconds. No particular spot - every square inch eventually twitched. If I was lucky to look at the right spot, when it twitched, I could see it - a large visible muscle twitch. I was unable to sleep because the twitches would jerk me awake, as well as I worried what what going on with my body. The next morning I worked from home and still had muscle twitches all over. Then again the next night. A bit less, but still all over and now perhaps one every 30 seconds, randomly all over my body. Managed to sleep a bit intermittently. The next 3 days/nights this pattern repeated: some fewer twitches, and a bit more sleep.
I'll note that this has never happened to be before. I've sometimes had the odd random single muscle twitch over the years, but nothing like this. After the bike ride, these twitches were literally constant.
Gradually, about a week later, the twitches became a lot more sporadic, but they are still here, and now they are about 50% in between my calf, thigh, and buttocks on my left leg, 25% on the same areas on my right leg, and 25% all over my body. So chest seems to be common; inside my stomach - I guess a deep muscle in my stomach - is also another place; my back; bicep; and sometimes forearm (either one). Now it is maybe once every 5-10 minutes, as opposed to once every 10 seconds in the very beginning.
In addition, about a week after that bike ride I have been sore all up the back sides of my legs: the calves, the backside of my thighs; and all up my buttocks muscles. This comes and goes, but has been pretty consistent most days. It is just this dull ache that comes and goes; it is still there when I lay down, for example, and is even there sometimes as soon as I wake up in the morning. This is still persisting until today.
Also, there is a shakiness/awkwardness to my standing now; even when standing for a short time, my legs feel shaky and tired and I feel like I want to rest - like I've been standing for hours. But I haven't. When walking or just moving, my legs feel awkward, and sometimes my arms do too. I've smacked the container of orange juice into the fridge wall, or into the side of the counter, or hit the side of my face with my toothbrush when trying to brush my teeth - just awkward things like that, that generally I'd never do before. My limbs - especially my legs - just feel tired and uncoordinated.
Also, sometimes there is this buzzing feeling in my legs; they feel like they vibrating. It's a strange sensation, like perhaps a ton of adrenaline is coursing through my legs and vibrating them at their core. This sensation is more sporadic, but it will still occur once every two days or so. It generally stops once I walk around for a bit.
Finally, I've lost about 10 lbs over the past 2-3 months. Not intentionally; and I haven't upped my exercise - in fact, I generally sit more because of my job - but I used to be about 202lbs for a year, and now I'm at 191lbs. It isn't a ton I know, but it hasn't been intentional. I've measured around my thighs, and my left leg - the one with most of the twitches - is about an inch smaller than my right thigh at parts. You can see it in this photo I attached here.
So I understand that fasciculations by themselves don't say anything. And I also know that a gold standard here - beyond an EMG - is 'failure not feeling'. There aren't things that I cannot do anymore. But before the 'failure' part in every PALS' experience, there must have been some period of pre-failure - some period where they noticed weakness for example, as some muscles compensated for the hidden - at this point - atrophy of other muscles. I'm of course wondering if I am in this phase now. I don't know why my body was bombarded with muscles twitches so suddenly; and why while they have receded, they are still here, and now more so in my legs (at least the majority). I don't know why the back of my legs ache so much so often. And why they seem to feel so fatigued and awkward to move. Obviously - by virtue of me writing here - I'm worried that is an indication of weakness or muscle atrophy in my legs. Add to that the unintended weight loss, and while statistically speaking I am not approaching a place of despair, I am these days navigating through a fog of 'what if' and worry. It is affecting my life. I'm 38; so while I know I'm 'young' in respect to ALS, I'm not 20 either, and I'm at/approaching an age where it isn't as rare as it would have been for me were I 22 years old.
I spoke to a doctor and he seemed very unconcerned with all this, and just told me to return to him if everything hasn't gone away in a month. Well it has been 3 weeks now, and I'm skeptical it will all be back to normal in a week.
So I guess the advice I'm looking for here is: this is worth pursuing, right? While I have no 'smoking gun' - in the case of 'foot drop', or being unable to do things I used to be able to do, or objectively measurable failing strength, or a 'dirty EMG' - I still have a strange enough combination of symptoms that wouldn't make it impossible for this to be ALS. And if it did turn out to be, while looking back on these symptoms, they wouldn't be completely typical, they also wouldn't be totally unprecedented either: fasciculations; aching 'muscles'; potential (albeit unproven) weakness; lost weight/(muscle mass?).
The National Institute of Neurological Disorders and Stroke (Amyotrophic Lateral Sclerosis (ALS) Fact Sheet | National Institute of Neurological Disorders and Stroke) list the early symptoms of ALS as:
"Early symptoms include:
The first 4 either definitely or seemingly apply to me. It therefore makes sense for me to go back to my doctor and see what is going on, no? Could all this together put ALS on the list of illnesses to be considering?
In any case, thank you to everyone here for the time and effort that you put in to listening to folks like me who pop in with questions like this, and thank you to anyone who comments; I just don't have anyone else in my life at the moment that I can ask a question like this. I think I will be going back to that doctor in a week, to see what is going on in any case. It would make sense that I do that, right?
About 3 weeks ago on the 20th of June I went on my regular weekend bike ride, which is a few hours, and about 15 miles. It had been a stressful week and even on the ride I was unable to push the stress out of my mind, and once I finished the ride and returned home, and then went to bed that night, I had fasciculations all over my body. It was something I’ve never experienced before. All night I laid there, unable to sleep for even a minute, as muscles twitched over every inch of my body. Every couple seconds. No particular spot - every square inch eventually twitched. If I was lucky to look at the right spot, when it twitched, I could see it - a large visible muscle twitch. I was unable to sleep because the twitches would jerk me awake, as well as I worried what what going on with my body. The next morning I worked from home and still had muscle twitches all over. Then again the next night. A bit less, but still all over and now perhaps one every 30 seconds, randomly all over my body. Managed to sleep a bit intermittently. The next 3 days/nights this pattern repeated: some fewer twitches, and a bit more sleep.
I'll note that this has never happened to be before. I've sometimes had the odd random single muscle twitch over the years, but nothing like this. After the bike ride, these twitches were literally constant.
Gradually, about a week later, the twitches became a lot more sporadic, but they are still here, and now they are about 50% in between my calf, thigh, and buttocks on my left leg, 25% on the same areas on my right leg, and 25% all over my body. So chest seems to be common; inside my stomach - I guess a deep muscle in my stomach - is also another place; my back; bicep; and sometimes forearm (either one). Now it is maybe once every 5-10 minutes, as opposed to once every 10 seconds in the very beginning.
In addition, about a week after that bike ride I have been sore all up the back sides of my legs: the calves, the backside of my thighs; and all up my buttocks muscles. This comes and goes, but has been pretty consistent most days. It is just this dull ache that comes and goes; it is still there when I lay down, for example, and is even there sometimes as soon as I wake up in the morning. This is still persisting until today.
Also, there is a shakiness/awkwardness to my standing now; even when standing for a short time, my legs feel shaky and tired and I feel like I want to rest - like I've been standing for hours. But I haven't. When walking or just moving, my legs feel awkward, and sometimes my arms do too. I've smacked the container of orange juice into the fridge wall, or into the side of the counter, or hit the side of my face with my toothbrush when trying to brush my teeth - just awkward things like that, that generally I'd never do before. My limbs - especially my legs - just feel tired and uncoordinated.
Also, sometimes there is this buzzing feeling in my legs; they feel like they vibrating. It's a strange sensation, like perhaps a ton of adrenaline is coursing through my legs and vibrating them at their core. This sensation is more sporadic, but it will still occur once every two days or so. It generally stops once I walk around for a bit.
Finally, I've lost about 10 lbs over the past 2-3 months. Not intentionally; and I haven't upped my exercise - in fact, I generally sit more because of my job - but I used to be about 202lbs for a year, and now I'm at 191lbs. It isn't a ton I know, but it hasn't been intentional. I've measured around my thighs, and my left leg - the one with most of the twitches - is about an inch smaller than my right thigh at parts. You can see it in this photo I attached here.
So I understand that fasciculations by themselves don't say anything. And I also know that a gold standard here - beyond an EMG - is 'failure not feeling'. There aren't things that I cannot do anymore. But before the 'failure' part in every PALS' experience, there must have been some period of pre-failure - some period where they noticed weakness for example, as some muscles compensated for the hidden - at this point - atrophy of other muscles. I'm of course wondering if I am in this phase now. I don't know why my body was bombarded with muscles twitches so suddenly; and why while they have receded, they are still here, and now more so in my legs (at least the majority). I don't know why the back of my legs ache so much so often. And why they seem to feel so fatigued and awkward to move. Obviously - by virtue of me writing here - I'm worried that is an indication of weakness or muscle atrophy in my legs. Add to that the unintended weight loss, and while statistically speaking I am not approaching a place of despair, I am these days navigating through a fog of 'what if' and worry. It is affecting my life. I'm 38; so while I know I'm 'young' in respect to ALS, I'm not 20 either, and I'm at/approaching an age where it isn't as rare as it would have been for me were I 22 years old.
I spoke to a doctor and he seemed very unconcerned with all this, and just told me to return to him if everything hasn't gone away in a month. Well it has been 3 weeks now, and I'm skeptical it will all be back to normal in a week.
So I guess the advice I'm looking for here is: this is worth pursuing, right? While I have no 'smoking gun' - in the case of 'foot drop', or being unable to do things I used to be able to do, or objectively measurable failing strength, or a 'dirty EMG' - I still have a strange enough combination of symptoms that wouldn't make it impossible for this to be ALS. And if it did turn out to be, while looking back on these symptoms, they wouldn't be completely typical, they also wouldn't be totally unprecedented either: fasciculations; aching 'muscles'; potential (albeit unproven) weakness; lost weight/(muscle mass?).
The National Institute of Neurological Disorders and Stroke (Amyotrophic Lateral Sclerosis (ALS) Fact Sheet | National Institute of Neurological Disorders and Stroke) list the early symptoms of ALS as:
"Early symptoms include:
- Muscle twitches in the arm, leg, shoulder, or tongue
- Muscle cramps
- Tight and stiff muscles (spasticity)
- Muscle weakness affecting an arm, a leg, the neck, or diaphragm
- Slurred and nasal speech
- Difficulty chewing or swallowing"
The first 4 either definitely or seemingly apply to me. It therefore makes sense for me to go back to my doctor and see what is going on, no? Could all this together put ALS on the list of illnesses to be considering?
In any case, thank you to everyone here for the time and effort that you put in to listening to folks like me who pop in with questions like this, and thank you to anyone who comments; I just don't have anyone else in my life at the moment that I can ask a question like this. I think I will be going back to that doctor in a week, to see what is going on in any case. It would make sense that I do that, right?
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