Very afraid of beginning ALS

[Cohen]

Dear all on this forum,

very worried 27 year old male from the Netherlands here. For the past six months I have been experiencing a lot of anxiety caused by my symptoms and what I have read about beginning ALS. Even after reading the stickies on this forum and an bunch of other threads, I am still very confused about these symptoms, so I finally decided to very kindly ask for advice on this forum.

Ever since six months ago I have been experiencing a gradually increasing kind of weakness in my limbs, which does not feel like a classic 'fatigue' kind of weakness. There is also no pain involved, but slight cramping does occur. The best way I can describe it is that it feels like some muscles do not contract properly. For example, when my fingers are in a completely relaxed state, it feels like it’s hard to get them to move when I try to slowly stretch them and as a result of this they ‘stutter’ (I included a video of this, link at the end of this post). On the other hand, when I just open my hand in a faster way, the stuttering does not happen. The thing is however that I feel like I need to force this fast motion or my muscles get stuck into stuttering, especially in my fingers and toes. It feels like I have to push these muscles over a certain 'barrier' for them to become actionable, but once they are, I can move them without too many restriction. The feeling of this ‘barrier’ being there and getting increasingly bigger is what worries me the most.

Secondly, I have been experiencing excessive twitching that does not seem like it is random. It nearly always occurs in muscles right after I use them. For example, when opening a door by pulling it, as soon as I let go of the door and my bicep relaxes, it immediately starts twitching. I experience this kind of twitching all over my body (hands, feet, neck, biceps/triceps, thighs, calfs, back, torso, neck, face), and it happens all day long and getting worse. As this also started around the same time my weakness began to be noticeable, it greatly worries me.

Furthermore, since about three months I've also been having trouble speaking properly. It feels like my tongue is not keeping up with my speech. However, I think up until now this has only been noticeable to myself, and I have not had anyone telling me I sound any different.

As some last notes: so far I did not find any signs of atrophy anywhere on my body of which I’m sure it is actual atrophy. Even though my muscles stutter in situations I described above, I feel like I have not lost any raw power up until now. For example I can still squeeze my hand into a fist with no problem, and I can still lift everything I used to be able to lift if I try hard enough. I can still walk at a steady pace for an hour without too much problem. It is mostly fine movement in which I find myself to become more and more clumsy at, such as holding a spoon and moving it towards my mouth or turning the pages of a book, just standing and not walking (in short, everything you need some strength, but not all for).

So here are my questions:

1) It is possible that development of fasciculations, weakness and contraction problems to in both hands, arms, legs and feet AND slurred speech, all developed in a timespan of six months, indicates beginning ALS? Do my problems resemble beginning ALS in any way in the first place?

2) Do fasciculations that are seemingly not random (but instead occur right after using a muscle) also occur in BFS and not only in ALS? Do I need to worry?

I have visited a neuro around 3 months ago and she performed some standard tests on me. According to her further research was not needed, but I will be going back next week since symptoms have noticeably worsened. That said, I hugely appreciate anyone reading my story so far. I hope someone on this forum can tell me something as well.

Link to video of me strechting my fingers:

https://youtu.be/zbRwqK5edaE

 

[Clearwater AL]

It's a good thing you have a Neuro appointment next week. What caught my eye is the intermittent movement of the ring finger. Not saying this is an indication of ALS but hopefully something the Neuro zeros in on. She will probably have you make a closed fist then open it as quickly as you can.

Maybe other members may chime in on your questions but do share them with your Neuro.

Good luck next week.

 

[KarenNWendyn]

I agree that it's a good idea to follow up with your neurologist. To me, it's not clear that this represents early ALS, but it suggests you may have some type of neuromuscular disorder that merits further investigation.
Good luck!
Karen

 

[Nikki J]

I don't know what to make of your hand and yes follow up

To answer your questions
1. It is highly unusual to see all areas involved ( legs, arms ,bulbar) so quickly. When it happens the person is usually extremely disabled quickly. Add to this that you report a normal clinical exam 3 months ago. It seems unlikely but as they say anything is possible

2 yes random fasciculations occur in bfs too.

 

[lgelb]

Sounds more upper neuron than lower motor neuron-related (if either). As others have said, followup with a neuro is the right path for now. Keep us posted.

Best,
Laurie

 

[Cohen]

Thank you all for replying and sharing your thoughts.

I want make a little more clear that the 'stuttering' I experience in the video only occurs when I stretch slowly like that. I am able to squeeze my fist and open my hand after as quickly as possible just fine. If this were ALS, would I have difficulty with 'maximum strength' and faster motion as well?

 

[Atsugi]

I think you're looking at many possibilities and ALS is not at all clear, here. Mostly, just get checked for peace of mind to if there is something going on there.

 

[Clearwater AL]

Cohen you wrote... "I am able to squeeze my fist and open my hand after as quickly as possible just fine." Bingo!

"If this were ALS, would I have difficulty with 'maximum strength' and faster motion as well?

Yes.

Follow up with your Neuro...good luck.

 

[Cohen]

Dear all,

I have finally been able to visit my neuro again. I have told her how my symptoms have worsened and how I was still worried about ALS. After hearing my story and showing her videos of my fasciculations (of which she said they were actually myokymia), she performed some of the same standard tests she performed the previous time (reflexes and what I guess are weakness tests). Like in the video I posted, she noticed that with slowly opening and stretched my fingers, my fingers would again stutter. According to her, it seems like my muscles have trouble relaxing, exactly as I suspected, as well as slight noticeable weakness in my pinky and ring finger. She also noticed I do not have problems with fast motion and full strength. Based on all of this, she told me she does not directly suspect ALS, but I do need to have an EMG soon for the weakness. While I am waiting for my EMG, I'd like to ask a few questions again, which I sincerely hope some of you could answer again.

As I stated before, I am not only experiencing this 'weakness' and 'relaxing problems' in only my left hand. It is also becoming noticable in my right hand and both legs and feet, as well as my tongue and lips. Especially my right hand and both feet feel like they are in a state right now that my left hand used to be in 1 month ago, right before the actual weakness started. I would like to ask whether it is possible at all in ALS that has progressed to the point of showing at least a little weakness, to show this kind of weakness in all of the mentioned areas this early on (roughly 6 months since my first symptoms). I am asking this because I read about ALS starting in one limb, and then progressing in a certain direction throughout the body. The symptoms showing in all extremities within this amount of time was for me one of the reasons pointing away from ALS but at the moment I am still quite uncertain about it. Is there somebody who would care to share some facts or exprerience regarding this?

As I have also mentioned, even though these parts feel like they have weakness associated with them, I am still able to put my full strength into all part of my limbs when I try to and this was one of my arguments I believed held most strong against ALS. However, I have now also read in the sticky that with ALS, it is usually so that weakness is not actually noticed until a certain percentage of nerve cells have died. In the meantime, other nerves take over the job of the nerves that have died and you are still able to exert full strength, it just takes more effort to do so, which is exactly how my parts feel right now. As only my left pinky and ring finger are showing actual weakness right now and can not exert full strength anymore, according to these statements this must mean a good amount of nerves in this area must have died already. Is it possible for ALS to have progressed this far within half a year? What should I think of this?

Lastly, the twitching in my left hand that I used to have after using the muscles in my left hand (which also started in my pinky and progressed to the thumb from there), have mostly stopped. I also read in a thread on this forum about twitching that the twitching usually begins when nerves start dying and then stops when actual weakness starts to show. I am worried that this is also the case with my left hand. Could someone verify (or disprove) this statement?

As you can read, I am still very worried. For now I will wait for the EMG and hope that somebody is willing to answer these questions for me.

Sincerely,

Cohen