Tension/twitching/fasciculations

[beck]

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).

 

[beck]

After posting this I have realized how long my post actually is. I wanted to give a detailed description so that you have a better overview of my issue, but now I realized how hard it must be to read this. I'm so sorry for this. Here's a summary and some specific questions:

29 yo, male
Symptoms:
- muscle tension in thighs, calves (feeling as if I ran a marathon the day before) - for over 4 months now
- legs, arms twitching (neck, head, stomach and whole body) - for over 1 month
- fasciculations (especially in legs, arms but also other parts), particularly occur when I try to relax muscles, but can feel it also when seated - for over 1 month
- twitching and fasciculations occur mainly when lying in bed, seating at a desk, standing still, seems to stop when walking
- tongue twitching (even when rested in the mouth) but looks like sometimes I can keep it still for a moment (when the tongue twitches, also corner of my mouth twitches)
- no other symptoms, I only remembered my left calf is thicker than the other (or maybe the right one is thinner) at the level of Achilles tendon, but it's been like that for 2 months at least

Neurologist said I don't need any new tests at the moment, not even EMG (ischemic test indicated tetany, but blood tests are fine, MRI of head probably clean). When I asked about ALS they did not rule it out, only said "it's a very rare disease".

Questions:
1. Do you think muscle tension might be any indicator (alongside other symptoms) or the very first symptom of ALS? This was my first symptom and it's been like that for 4 months.
2. With bulbar onset, can you make the tongue fasciculations stop sometimes? Or is it persistent and there's no way of stopping it even for a moment?
3. If I have symptoms concerning both legs/arms and tongue at the same time does this mean ALS is even less likely? (limb and bulbar onset at the same time?)
4. What do you think about the overall timeline? Over 4 months after the first symptom, new symptoms came up after 3 months, no signs of atrophy or failures.

Thank you so much for reading this and sharing your thoughts.

 

[Nikki J]

1 muscle tension. I am guessing you have read something like muscle stiffness being an ALS symptom. This is a somewhat poor attempt to describe spasticity ( which can be a sign of ALS) in laymen’s terms. Spasticity is detected by the doctor on clinical exam. Yours was not concerned by your exam so you don’t have it

2 twitches/ fasciculations without weakness are not worrisome

3 yes

4 highly unlikely and most atypical of ALS

thank you for the shorter post summary

 

[beck]

Thank you very much for your response!

Yes, the doctor ran a clinical examination on me, it was quite basic, took 4-5 minutes, but they didn't say anything was wrong. I will probably see another neurologist and (as advised by the doctor) I will also see a psychologist/psychiatrist because there might be other background of my symptoms indeed. One thing I didn't mention was that I suffered from Covid this January (it was rather mild - only cold-like symptoms) and actually one month after recovery the twitching began so it might be related to this as well. But I guess no doctor will give an answer this is 100% long covid, we just don't know. But the thighs tension started way before so it could have been actually caused by something else.

 

[beck]

Your answer was reassuring and it helped me a lot yesterday. But I'm still thinking about the twitching, I can feel it all day today. I keep asking myself few questions that maybe will help me clear my doubts if I manage to find answers to them:

1. Does the twitching in ALS stop after you start moving? It does in my case (e.g. when I go for a walk it seems to help) so I was wondering if this could be any indicator? Btw not sure if I'm precise enough: when I say "twitching" I actually mean a feeling similar to chills (in legs or arms or sometimes whole body), just less intensive. And when I talk about "fasciculations" I mean a subtle "pulsation" in a small area of some particular muscle.

2. Like I mentioned before I have noticed that one of my calves is slightly thinner than the other, I have read atrophy usually follows weakness, but no weakness was detected by the doctor. Do you think, if it was atrophy, I would have already started experiencing weakness by now? (I know for sure my calves have been like that for at least 2 months - this was when I measured them, but it's also possible it's been always like that, I never paid attention tbh) - btw I had a CK test done 3 weeks ago and it was within normal ranges, but I'm not sure if it says anything

3. Still thinking about tongue "fasciculations" - I think sometimes it moves, but there are moments when I can keep it still and do not observe any movement, at least for a short period of time. Do you think this could be any indicator? If this was bulbar onset, would I be able to calm down the tongue fasciculations at all?

4. Does the twitching come with hand/arm/finger tremor (e.g. like the one seen in Parkinson's, just more subtle)? Actually my "twitching" began when I first noticed my fingers, then hands and then whole arms starting shaking a bit. Especially when I put my arms straight out in front of me. And later I noticed the same happens with my my legs, shoulders, chest sometimes. I am asking because maybe what I'm describing is actually not the twitching that could be potentially associated with ALS?

5. UPDATE: I just noticed during my evening walk that my legs feel a bit different. I mean, I can still walk and do everything (calf raise etc), but I just don't feel as confident with my right leg as before. I mean, both my legs are shaking now and I don't feel that stable when standing and walking, but I feel like my left leg is more "stable". It's freaking me out, because I think the "weaker" area is my right calf (which is thinner than the left one). Hopefully it's just some fatigue. I just walked up the stairs (7th floor) so I can clearly do this, but still I'm worried it might be the beginning of weakness.

I would appreciate some thoughts on this, maybe it will help me clear my doubts. I apologise for taking more of your time, but I've been feeling really anxious about this recently.

 

[lgelb]

None of the "indicators" you cite are worrisome for ALS. It is probably your pesky mind that is connecting your thinner leg with less stability. No one is totally symmetrical. And yes, the atrophy of ALS comes along with reduced movement because with dead motor neurons, muscle bulk is lost.

It is pretty common that if you had some little issue pre-Covid, that after Covid it worries you more. Since often Covid takes a long-term toll on the body in any event, this is a good time to take stock of what you eat and drink; your exercise, sleep, stress and stretching; your primary care team and how it is supporting you. It is good that you are seeking counseling, and I encourage you to address your fears with your counselor.

Best,
Laurie

 

[beck]

Thank you Laurie! You are actually right about my diet, sleep and stress. I've been having problems with sleep for years. Sometimes I only have 3-4 hours of sleep and feel extremely exhausted because of this. And I'm always struggling with stress. I feel much better (mentally) after your feedback. The doubts that I have came up when I stumbled upon some old threads where people mentioned ALS cases without actual clinical weakness, just fasciculations. But I suppose this must be very rare (if possible at all) and of course I trust you if you say there is nothing worrying in my story. I even started thinking about some coughing that I'm experiencing when drinking sometimes but it's nothing disturbing actually and I have read in this forum this is not an actual "symptom". And I am aware this could be only my mind imagining all this.

I will have an appointment with another neurologist next week (ALS-specialist this time) I guess just to be super sure, and if they are not concerned either, I think this will help me a lot for my anxiety. And I will post an update afterwords just in case someone else has similar doubts in the future.

Thank you for your replies once again! I actually felt bad for bothering you and really appreciate your effort and taking the time to help me. I have found so much valuable information in this forum. I definitely plan on supporting it.