Fasiculations & Weakness

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Momo2021

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Hi All,

First and foremost, thank you for taking the time to answer all the questions of posters, given the immense struggle you are carrying of having or caring for someone who has ALS. As a person who hasn't been diagnosed, I can only imagine the daily grind and toll it takes on people physically and mentally. I wish you all the best in dealing with this horrific disease.

That said, I know very little about ALS when compared to you all. Like many, I've ventured into the vast expanse that is Dr. Google in search of answers and have come to regret it. Sure, it can sometimes provide clarity that something is wrong, but it obviously can lead to anxiety that need not infiltrate one's life if not even diagnosed yet. With all this said, I have an appointment with a Neurologist on March 2nd for a consultation. I'll be sure to post followups as I know more. For now, I'd like to share my symptoms to see if you all have any clarity, since many of you are experts on this subject.

My situation began back in April 2019. I was in a restaurant and went to grab my credit card out of my wallet to pay, and it just felt different. It felt like my dexterity in completing such a simple task had changed. It felt weaker. Yes, I could still complete the task, but it felt strange. Around that time, I did my first Google search and discovered the symptoms of ALS. I did the standard jar opening, shirt buttoning, and key turning tasks, which were all fine. I even ordered a grip strength tester, and my grip was 160 pounds in my left and right hands. Over the next few months I was always paying close attention to my hand strength. I was still able to type well and use a mouse at work and handle all normal maintenance tasks, just felt weird. I've always been clumsy and dropped things, but the weird weak feeling didn't go away. The best way of describing it is a fatigued feeling. After awhile, I got over that obsessive stage. I got massages regularly and it seemed to help. I determined that it couldn't possibly be clinical weakness, but regretted noticing that one of the other common symptoms was twitching.

My first twitching area of note was my bicep. It was intermittent and went away after about 2-3 weeks. But twitches started springing up everywhere thereafter. I've had them in my hands, abdomen, legs, thighs, eyelids and surrounding eye muscles. At this point there really aren't too many more areas that I haven't had twitches in. With these twitches came a new sense of anxiety that it could be ALS. I tried to be sensible knowing I'd have weakness, but I'm a naturally strong person (6'1" 320 M) and didn't know if it would manifest differently for someone of my stature. The twitches have continued sporadically in different areas of my body daily for about 1 1/2 years now. Now I fear I'm starting to experience real weakness.

Last week I started working out again for the first time since we had our daughter. I did some dumbbell curls, three sets for each arm, and I noticed for the first time in my life that my right arm was weaker than the left. I was doing 30 pound sets of 10-15 reps. I was barely able to do my final reps with my right -- dominant hand -- and it was much easier with the left. I attributed this to having a baby that I've carried around in my left arm for the passed year which has created an imbalance. I went back and did another set this week and ripped off 10 reps with my left arm and could barely muster 4 with my right arm. Right now I'm still having the intermittent twitching and my right arm muscles feel fatigued and weak. I can still do all normal maintenance tasks but even holding my baby in my right feels very, very exhausting.

As a side note, last week I had a 2-3 mild cramps in my abdomen when bending over or twisting myself around to look at something. They haven't occurred since and I attribute that more to being out of shape than ALS. Does that ring true? Since they haven't continued I don't feel quite as uneasy about those but I think the cramps may have made me start worrying more.

I'm not looking for a diagnosis, but mainly to see if any of this sounds like it could be ALS in your experience. I know that nothing will be more concrete than getting to see my Neurologist and getting real tests. Thank you all in advance and I look forward to learning more about this from you.

Kindest regards
 

lgelb

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Congrats on your daughter.

The dominant hand is often the one to experience any signs of a repetitive motion injury, or weakness from a long layoff. It is also possible that when you were holding your baby in your left arm you were pressing your right or bracing your baby in an awkward position, esp. early on.

Of course, after a layoff from lifting, I am also not surprised that you got more juice out of the arm you've been weight-bearing on, nor would it be shocking if your first session back, your stamina was atypical for you across the board. Your baby at 1y I doubt is the size of your weights!

Widespread twitching, particularly across the time period you mention, argues against ALS or anything like it. I would expect a neuro will be reassuring.

Best,
Laurie
 

Momo2021

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UPDATE

31, M, Twitching (21Mos)

Thank you, Laurie, for your kind response. Great community here. You were right, the Neurologist was reassuring.

I wanted to write up an update, as I saw my Neurologist earlier this month. She did a complete clinical exam and ask/answered many questions for 45 minutes. She examined me for atrophy and performed blood work (CPK, Autoimmune), all of which came back totally normal. At the end, she stated she isn’t seeing ALS; however, she recommended I have an EMG for piece of mind. I’m betting she probably sees a ton of people with similar twitching concerns, as she is the one who brought up ALS and cut straight to an EMG. It’s as if she knows most people won’t let it go until they get a clean EMG. I’m not here to agree or disagree with her approach, but I get it.

In terms of atrophy, I had her examine my right thenar (APB). The right (dominant) APB looks to be smaller to me than my left. I notice when I stretch it out, I see large dents in the muscle. When flexed, however, it appears to be fairly well formed. At rest there doesn’t seem to be a drastic difference. My Neurologist tested the strength and said it’s great. Also, she looked at the surrounding muscles and said they are all well formed and strong, so she chalked up what I was seeing as an “anatomical difference.” I’m trying to take her word for it. FWIW, my ADI looks much stronger on my right than my left, so could be true that it’s nothing. I have played a lot of video games throughout my life and most games require a lot more use of the left thumb on the joystick. Rationally, I’m trying to believe that’s the cause. I’ve been having a decent amount of pain running through that right APB in recent weeks. I’ve seen posts that indicate such pains point away from ALS and I’ve seen those that say the opposite. Does anyone know if atrophy is more something that would show up at rest? Does it also show when flexed in most cases, too? Also, does anyone know if pains in the thenar at rest, when using it, etc. ever really seem to point at ALS?

For now, my Neurologist has me taking some magnesium, though I’m not deficient, to see if it helps alleviate any twitching. Ultimately, I’ve done everything, including eliminating caffeine, taking proper vitamin levels, sleeping 8+ hours per night, and CPAP which is properly monitored for adjustments. I guarantee my stress and anxiety aren’t helping and that’s one of the biggest issues. I can see how fearing twitching leads to more twitching. Does water consumption really factor into twitching or is this anecdotal? I asked my Neurologist and she didn’t seem to believe it mattered much if at all. I’ve seen very mixed thoughts. For instance, on the Ohio State Medical Center website it acknowledges it, but Mayo clinic says nothing about it being a cause. Just weird to me if such a simple thing could help that not all sources agree. I’m preemptively hydrating as there’s no way it could hurt.

Overall, no obvious signs of weakness or atrophy to report. The twitching has kicked up a notch since my EMG was scheduled. The wait really has me on edge and scared. My bottom left eyelid went on a rampage for about three weeks. At a certain point it twitched for 24 hours straight. My cheeks, surrounding eye muscles, and chin have also been affected. Met with my Neurologist for a 15-minute appointment and she said it could be hemifacial spasms as they’ve been mostly confined to the left side. She updated all my case notes and said she suspects BFS and has no reason to suspect limb onset and there are no bulbar signs. Does anyone know if hemifacial spasms commonly run with BFS?

I’ll be sure to update after my EMG in hopes of helping future visitors who struggle with these twitches.

PS I’ve read the stickies several times apiece. I’m back because I’ve perceived weakness, atrophy, spasms, and twitching. While I trust my Neurologist, I will await the results of the EMG. If normal, I will update my post and get lost.
 

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Best to just wait for your results - as the sticky says, we are here to answer you and we have done that. We can't have our paralysed members read such large posts and hold your hand - you have doctors that are working with you to sort this out. Keep working with them - they are examining you and finding nothing of true note and you have said has NO REASON to suspect anything sinister. Twitching means nothing remember that.

Let us know the result, you have no hallmark ALS symptoms so it is purely to give you peace of mind.
 

Momo2021

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UPDATE

Went for my EMG last week with my Neurologist. She tested my right arm, right leg, and left leg. She said she could only test three limbs. Not sure if this was an insurance thing or a standard bit. Anybody know on this?

In my right arm, the outer deltoid, bicep, outer tricep, middle of forearm, and FDI thenar were all tested. There was nothing abnormal about the results in this arm. My right leg was tested in my calf, tibialis, and thigh muscles. It was completed clear as well.

My left leg was tested in the calf and thigh muscles (right above the knee and higher up on the outside). Each time the needle was inserted my muscles went crazy with twitches. When she tested my upper, outer thigh, it was totally calm. My calf went nuts, and the muscle right above the knee, I believe it’s called the vastus medialis.

Anyway, as she investigated in the twitching muscles, she said the neighboring muscle tissues were totally quiet and normal. As a result, she didn’t think much of the twitches upon needle insertion. She explained that BFS is hyperactivity of the muscles, so sometimes when the needle goes in, they start to twitch and act up.

I re-inquired about some perceived thenar atrophy I’m seeing in my APB. My Neurologist again bent my thumb back and had me resist her. She keeps stating that if my muscle is completely nonexistant upon resistance, meaning it’s totally flat, that I should not worry. That said, it’s my dominant thenar and it’s never been smaller than nondominant. There’s also been random pains in this APB muscle and fatigue. There are dents, but I realize those may have always been there in the first place. It’s the fact that muscle feels soft and like it’s lost bulk which is a major concern to me. She looked at it and probably would’ve said if she thought it was atrophy.

The final report doesn’t show the typical waves most reports do. She did include a section indicating which muscles were tested. It shows things like if there were fibrillations and MUAPs, etc. The report is entirely zeros across the board. The states there is no sign of MND or muscle disease.

Given the clean clinical exam and reportedly clean EMG, I’m feeling a bit better. I’m still able to complete all normal tasks with no weakness that I can tell. I’ve started on a SSRI to help with the anxiety. My right hand feels fatigued and weak, similar to what one might feel when they get out of bed in the morning. It seems like it's all the time. Sometimes I feel this fatigue from neck down through my arm into my hand. The EMG/NCS found no nothing at all, which is why I'm still concerned.

Here’s a few questions I had the Neurologist refused to directly answer:
  • If there was meaningful thenar atrophy (APB) in my right, dominant hand, in the arm that had the EMG, is it likely ALS would’ve shown up somewhere else that was tested in my right arm?
    I just have concerns that, given my symptoms, failing to test the APB could be a problem. I did voice this with the Neurologist and she basically ignored me. My FDI was tested and was clean, but that's innervated by a different nerve.
  • Given the thenar muscle on the palm side is made up of three muscles, isn’t it possible that one could fail and the other two could work to make up for it, causing the fatigue and pain I’ve been having?
  • Was my Neurologist’s explanation of the twitching in my left leg when the needle was inserted reasonable? I’m no EMG expert, as many of you here are, but it seemed weird that twitches happened in one limb when three were tested.
  • Overall, I’ve had twitching of varying degrees for 24 months. It started in my right bicep and has happened basically everywhere. Sometimes I get hotspots that last a couple days, but mainly sporadic. If I first noticed the twitches in my bicep 24 months back, is it safe to say that area and other areas I twitched in my right arm would’ve shown signs of ALS on the EMG?
I appreciate your insights in advance. I do not plan to hang around here taking up all your time. I do realize this was long and I don’t plan to continue this in any long way going forward, unless my results change with my Neurologist and I’m forced to. I just didn’t really get firm answers from her.
 

lgelb

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1) If the atrophy reflected ALS, yes. There is no reason (or way) to test every muscle. The hallmark of ALS is EMG abnormalilties where there are not complaints.
2) No.
3) It isn't weird at all.
4) Yes.

You are good to go. BFS often responds to sleep, diet, stress and exercise regimens. As a side note, eliminating caffeine could cause more twitching if you can't live without it in the morning. With some experimentation, you will find what works best, from tai chi to meditation to more protein.

Best,
Laurie
 

affected

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The read before posting sticky answers lots of your questions too. I'm so glad you had this excellent result.
Please let ALS go and join groups or forums for BFS as you can discuss the details of your symptoms there with people who experience the same. Great news!
 

Momo2021

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Thank you all for you comments and support. I appreciate your insights and respect for people even when their issues are small compared to what you all have/are dealing with.

I do have a few more questions given a recent change to my condition.

First, as stated above, I had a clean EMG of my right arm with five points checked from upper arm down to hand. My goal has been to not question the result. I've done well to this point, but I'm now having a significant change in the way my twitches are occurring in my right arm.

I've always been able to feel my twitches. I noticed the other day when resting my arm on my leg that my right forearm muscle right below the elbow, I believe the flexor carpi ulnaris, has been twitching without me feeling it at all. It usually is pretty quiet while at rest, but if I flex it hard or push off it in a way that uses the muscle it usually will cause it to spaz out. It feels much different than the other twitches. It's much, much harder, faster, and alternates between an almost quivering and hard thumping spasm. It usually will twitch for a minute or two after any kind of significant use and then quiet at rest. It twitches sparingly at rest.

Now, I totally appreciate a twitch is just a twitch. Believe me, I've told myself this, but my Neuro said she thinks it's much more of a red flag for MND having any twitches you can't feel, including any spasming. I've reached out to her and she hasn't responded and it's been several days. I will be doing so again this week. It's annoying she's not taking this seriously, considering she's the one who said having twitches you can't feel is a bad sign. You'd think if a patient messaged her office about it she'd at least schedule an appt even if I did have to wait to see her.

Is not being able to feel the twitches a huge deal? Have people with benign conditions, like BFS, not been able to feel theirs? Basically, is it really highly suspicious for MND if you have twitches you can't feel? Didn't see this addressed in the read before posting. Also, are spasms any more indicative of MND?

One other thing: this Neuro is very kind, but her report doesn't seem to line up with what I recall her actually doing. For instance, she listed muscles on the EMG as being tested when I distinctly remember her not testing those areas. She never tested the tibialis on my left leg. She did three total spots in the left leg. Now, the report shows like 5 spots. I also had increased insertional activity in each spot she needled in the left leg. She moved the needle into other surrounding muscles and claimed it was quiet so there was no issue. Her report indicates nothing about this happening. Does anyone have any suggestions on how to take this up with her without doubting her professionalism and the results? Would it be better to request a second opinion or something? I don't want to be a jerk but I also want to get accurate results. Don't get me wrong, I hope she's 100% right in her findings.

Thanks in advance.
 

Nikki J

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I don’t believe feeling or not feeling twitches is a red flag I have never been told it was even significant

are you an electrophysiologist? How do you know there was increased insertional activity? Noise does not equal increased insertional activity. There is much more to it
 

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nope, twitching on its own means nothing as we have said. maybe make an appointment to see your neurologist, but we really can't do anything more as we are simply being asked to repeat ourselves. all the best, please join a BFS group and discuss this there
 
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