Hi everyone! I have read the "read before posting" thread, but I'm still not sure, so I thought could ask here. Especially since I saw a neurologist today and I asked directly about my worries, but did not get much relief. The doctor said I don't need to have any more tests done atm, but when I asked about ALS directly, all I heard was "it's a very rare disease". (I think they don't have that much experience with ALS, I plan on visiting another doctor anyway).
I am 29 and there were no ALS cases in my family. My symptoms started in November/December (over 4 months ago) with muscle tension, especially in thighs (both front and back side) and calves, and now I can also feel this tension/stiffness higher, in my buttocks. (Actually before that, in October, I experienced some pressure/tightness in my chest, but only when I took a deep breath - as if it was tied with a rope, but this passed on it's own after 3 weeks, still don't know the reason so I'm mentioning this, but not sure if it's related in any way).
Then, over a month ago I started feeling some twitching - first in my hands (mainly fingers), later also legs (thighs mainly, sometimes calves) and also arms, head a little bit. At some points my whole body is twitching a little bit, and sometimes it is limited to only certain area and I can barely feel it. I have an impression the twitching is persistent, but sometimes it is so "mild" that I don't even feel it. I can feel it when touching my leg, but you can't really see it. Nobody really noticed this looking at me. I think the twitching gets worse in the evening, when I go to my bed and try to fall asleep. I can also feel it when sitting at a desk / on a couch or when standing still. To me it feels like it "stops" or reduces when I'm walking. (but maybe I just don't feel it when I'm moving my legs).
Another thing I noticed were fasciculations - looks like a subtle "pulsation" of some parts of my muscles. I can feel it and I can see it, usually it stops after a minute or two or when I start moving that part of the body. I can feel it in different areas, mainly legs, but also arms, feet, my neck, sometimes my stomach. But I would say mainly legs, and sometimes it really feels like worms crawling on / underneath my skin - when I start moving it stops. I have also noticed that this happens when I'm trying to relax - usually before sleep I do Schultz's autogenic training to relax my legs a little bit (not always helps though), and I noticed that while the tension and twitching goes away a little bit, this is when fasciculations kick in. It's hard to say whether it happens only when muscles are relaxed, sometimes I feel this also when seated or driving a car.
And then I started reading more, and I found out about tongue fasciculations. I would say yesterday it was twitching a little bit, probably not as much as in videos I have seen. I check with the tongue resting inside my mouth. Sometimes however, it's rather still. When I open my mouth very widely and my lips are "stressed" I can see both tongue and corners of my mouth twitching, but If I open the mouth only a little bit, it looks more still, at least for a moment. So here is my important question I couldn't find an answer to: with the bulbar onset, can you actually "stop" the tongue fasciculations for a moment? Can it "come and go"? Or is it persistent and you can't do anything about it even if you try to relax your tongue? The doctor ran a physical examination on me, including the tongue, and they said they could see it moving. But they did not say whether it looked like fasciculations in bulbar onset (again, probably didn't have much experience with this). They asked whether I had any troubles swallowing (and I don't or at least haven't thought about it) or if there was any atrophy on the tongue (and I can't see any). Another question that comes to my mind: if I have symptoms related to both my legs/arms and also mouth/tongue - is it actually likely to have both "limb onset" and "bulbar onset" at the same time?
Sometimes I can also feel some fatigue in my legs, like today for instance. But it concerns both legs, not one specifically. I think this is a general fatigue that I feel. I mean, there is nothing I can't do, I can walk, run, jump, I guess I could do 10 squads, but my thighs would hurt. But I assume, this would be kind of normal given these muscles have been constantly stressed for the passed 4 months? Sometimes I can feel an overal fatigue in my whole body or feel that my arms are "heavier" (also things I pick up feel heavier), but from what I have read this is not really a sign of ALS (?)
When it comes to the tests I have done so far, I did a tetany test which was positive and initially the doctors said I have a "latent tetany", but all the blood test results so far are fine, so nobody now can really guarantee all my symptoms are caused by tetany (one doctor even said I don't have tetany), and this is why I'm also looking for other diseases. I also had an MRI of head done (to rule out MS) and it showed some very minor areas of a "non-specific" demyelination. But no areas were highlighted after contrast was applied (sorry, I'm not native English speaker and I'm not familiar with medical terms but I hope you know what I mean) and the doctor said these are "normal" and should not cause my symptoms. I just have to do another one in 6-12 months to see if anything changes (this was my first MRI). And now the doctor said I don't need to do any other tests at the moment (not even EMG), but I should pay attention to my body and contact them if I notice any atrophy in the muscles or any new worrying symptoms.
I'm sorry if this was already answered somewhere else, but I'm feeling uncertain and would really appreciate it if you looked at my case and tell me what you think. Does this whole description sound anything like ALS? Should I be worried? Or maybe actually the opposite? I must admit, I'm feeling more and more anxious and it really doesn't help. There are days when I sort of "forget" about this for a moment, but once I start thinking I can feel all the symptoms again. However, the first symptoms - muscle tension, is present all the time. Sometimes it's better, sometimes worse but I constantly feel as if I had run a marathon the day before (even when all I did was lying in bed). Hot showers and massages help a little, but for a short time. I'm not sure if muscle tension plays a significant role in ALS? Also, if you could take a look at the whole timeline - do you think it's too long for ALS for instance? (assuming these symptoms are related, muscle tension might be something else and twitching might be sth else).
I am 29 and there were no ALS cases in my family. My symptoms started in November/December (over 4 months ago) with muscle tension, especially in thighs (both front and back side) and calves, and now I can also feel this tension/stiffness higher, in my buttocks. (Actually before that, in October, I experienced some pressure/tightness in my chest, but only when I took a deep breath - as if it was tied with a rope, but this passed on it's own after 3 weeks, still don't know the reason so I'm mentioning this, but not sure if it's related in any way).
Then, over a month ago I started feeling some twitching - first in my hands (mainly fingers), later also legs (thighs mainly, sometimes calves) and also arms, head a little bit. At some points my whole body is twitching a little bit, and sometimes it is limited to only certain area and I can barely feel it. I have an impression the twitching is persistent, but sometimes it is so "mild" that I don't even feel it. I can feel it when touching my leg, but you can't really see it. Nobody really noticed this looking at me. I think the twitching gets worse in the evening, when I go to my bed and try to fall asleep. I can also feel it when sitting at a desk / on a couch or when standing still. To me it feels like it "stops" or reduces when I'm walking. (but maybe I just don't feel it when I'm moving my legs).
Another thing I noticed were fasciculations - looks like a subtle "pulsation" of some parts of my muscles. I can feel it and I can see it, usually it stops after a minute or two or when I start moving that part of the body. I can feel it in different areas, mainly legs, but also arms, feet, my neck, sometimes my stomach. But I would say mainly legs, and sometimes it really feels like worms crawling on / underneath my skin - when I start moving it stops. I have also noticed that this happens when I'm trying to relax - usually before sleep I do Schultz's autogenic training to relax my legs a little bit (not always helps though), and I noticed that while the tension and twitching goes away a little bit, this is when fasciculations kick in. It's hard to say whether it happens only when muscles are relaxed, sometimes I feel this also when seated or driving a car.
And then I started reading more, and I found out about tongue fasciculations. I would say yesterday it was twitching a little bit, probably not as much as in videos I have seen. I check with the tongue resting inside my mouth. Sometimes however, it's rather still. When I open my mouth very widely and my lips are "stressed" I can see both tongue and corners of my mouth twitching, but If I open the mouth only a little bit, it looks more still, at least for a moment. So here is my important question I couldn't find an answer to: with the bulbar onset, can you actually "stop" the tongue fasciculations for a moment? Can it "come and go"? Or is it persistent and you can't do anything about it even if you try to relax your tongue? The doctor ran a physical examination on me, including the tongue, and they said they could see it moving. But they did not say whether it looked like fasciculations in bulbar onset (again, probably didn't have much experience with this). They asked whether I had any troubles swallowing (and I don't or at least haven't thought about it) or if there was any atrophy on the tongue (and I can't see any). Another question that comes to my mind: if I have symptoms related to both my legs/arms and also mouth/tongue - is it actually likely to have both "limb onset" and "bulbar onset" at the same time?
Sometimes I can also feel some fatigue in my legs, like today for instance. But it concerns both legs, not one specifically. I think this is a general fatigue that I feel. I mean, there is nothing I can't do, I can walk, run, jump, I guess I could do 10 squads, but my thighs would hurt. But I assume, this would be kind of normal given these muscles have been constantly stressed for the passed 4 months? Sometimes I can feel an overal fatigue in my whole body or feel that my arms are "heavier" (also things I pick up feel heavier), but from what I have read this is not really a sign of ALS (?)
When it comes to the tests I have done so far, I did a tetany test which was positive and initially the doctors said I have a "latent tetany", but all the blood test results so far are fine, so nobody now can really guarantee all my symptoms are caused by tetany (one doctor even said I don't have tetany), and this is why I'm also looking for other diseases. I also had an MRI of head done (to rule out MS) and it showed some very minor areas of a "non-specific" demyelination. But no areas were highlighted after contrast was applied (sorry, I'm not native English speaker and I'm not familiar with medical terms but I hope you know what I mean) and the doctor said these are "normal" and should not cause my symptoms. I just have to do another one in 6-12 months to see if anything changes (this was my first MRI). And now the doctor said I don't need to do any other tests at the moment (not even EMG), but I should pay attention to my body and contact them if I notice any atrophy in the muscles or any new worrying symptoms.
I'm sorry if this was already answered somewhere else, but I'm feeling uncertain and would really appreciate it if you looked at my case and tell me what you think. Does this whole description sound anything like ALS? Should I be worried? Or maybe actually the opposite? I must admit, I'm feeling more and more anxious and it really doesn't help. There are days when I sort of "forget" about this for a moment, but once I start thinking I can feel all the symptoms again. However, the first symptoms - muscle tension, is present all the time. Sometimes it's better, sometimes worse but I constantly feel as if I had run a marathon the day before (even when all I did was lying in bed). Hot showers and massages help a little, but for a short time. I'm not sure if muscle tension plays a significant role in ALS? Also, if you could take a look at the whole timeline - do you think it's too long for ALS for instance? (assuming these symptoms are related, muscle tension might be something else and twitching might be sth else).
