Without weakness, twitches don't mean a thing!

[liveinthenow 15]

Hi all,

I had another extremely irrational a*s freak-out to my dad today (poor guy must be getting sick of it by now!), mainly about body wide twitches and weird sensations and cramps and stuff like that, and he gave me a pretty exhaustive list of things you would NOT be able to do if you had TRUE weakness/immobility/unusability of a muscle.

First of all, again he clarified that motor diseases only affect power - simple as that. So if there is no power deficit, it's actually impossible to have a motor diseases regardless of what you and I have read online. Any reflex-related stuff is a result of an interrupted neural loop which again would have power-related consequences. So whenever you feel a twitch in the following areas, remember that if you can still do the following things, you are not weak and the twitches are just anxiety! 

Hands:

Early weakness in hands presents as lack of coordination, so can you:

Do up buttons? Type on a computer? Pull up a zipper? Eat with a knife and fork? Play piano or guitar or any other instrument (assuming you already knew how!)? Make a tight fist (this might be harder earlier in the morning)? Spread your hand out? Touch your fingers to your thumb rapidly? Pick up coins/small objects from a table? Sew/knit? Use chopsticks (again if you already could!)? Open a door handle? Write?

Arms and shoulders

Can you: 

Do push ups? Pull ups? Lift objects from high places? Hang paintings? Lift your arms or other objects above your head? Lift and carry grocery bags in from your car? Lift mugs and cups to your face? Carry your young child? Steer your car? Shrug your shoulders? 

Back/neck/abdomen

Can you:

Sit up out of bed? Lift your head off of your pillow? Do sit ups? Bend over without your chin flopping towards your chest? Sit up straight/have a good posture? Do leg lifts/any other core-related exercises?

Legs and feet

Can you:

Wiggle your toes? Walk on your toes and heels? Do calf raises? Stand up out of a (not too low) chair? Do squats? Jump?  Run/walk up or down stairs? Tap your toes on the ground with your heel on the ground? Rotate your feet outwards and inwards? Go for a run without tripping consistently? Ride your bike? 

Mouth/tongue

Can you:

Wiggle your tongue in your mouth (side to side and up and down)? Run your tongue around your teeth? Push your tongue against your cheeks? Stick your tongue out and pull it up towards your nose? Sing along to any song with changes in range and volume? Swallow without consistently regurgitating food and liquids up your nose (as if you've laughed while drinking milk)? 

 

These are all things that would be IMPOSSIBLE if you had true weakness of any of these muscle groups. This sure helped me and I hope it helps some people achieve clarity about their fears. Here is also a great link that substantiates this list. https://clinicalgate.com/proximal-distal-and-generalized-weakness/

 

Hope everyone has a peaceful day,

Matt 

 

EDIT: An interesting observation is that after a beer or two, or when I'm distracted with something interesting, my symptoms seem to almost disappear - they wouldn't go away if it were truly something sinister! 

[Holls 1486]

This is a great post. I hope any of those suffering from this fear will re-read this if any doubt or fear creeps in. Hugs all. I was an als worrier, off and on for two years..I'm a lot better now but I was in such a bad, scary place for a long long time. This post is just another reminder that you are healthy and twitches mean nothing.. absolutely nothing. 🥰😘

[ZenCube 58]

Shoule be a sticky. Awesome!

[jonathan123 2358]

I can't do half of these things so I must be ill. Thanks. .

 

 

[liveinthenow 15]

18 minutes ago, jonathan123 said:

I can't do half of these things so I must be ill. Thanks. .

 

 

These are all coming from a doctor, are everyday representations of a neuro exam and subject to everyone's interpretation - if you could never do a pull up, not being able to do one now doesn't mean you are sick. 

[JDMez 16]

Appreciate this post greatly.  Even after two long years of this crap I still struggle at times.  Again, great post!

[MamaBear 2]

Thank you very much for this post. I’ve been hesitant to make my own post about my symptoms because I’m afraid of the responses—that someone will say something that sends me over the edge.

I have all over twitching/buzzing/electrical type sensations from my head to toes. Scalp. Tongue. Lips. Cheeks. Mid back. Biceps, triceps, hands and feet. Calves and ankles. Not all at once. Various areas at various times.  From big thumpers, to tiny electrical currents and invisible vibrations, to little rubberband snap type sensations. They do seem to go away with distraction (while shopping, while hanging out with friends. Etc), but I’m at my wits end.  I’m so sick of myself! Lol.

I’ve been twitching and buzzing for almost a year.  I have a Neuro appt on Aug 20th and I’m terrified of him even suggesting an EMG. The mere suggestion would ruin me I’m sure.  

This post does help me though, because I CAN still do all those things.  I’ve also been looking up stats on other things. I had a better chance of being born a Siamese (conjoined) twin. Or of having a set of IDENTICAL triplets. 1/3000 chance of getting struck by lightning in my lifetime. That’s wayyyyyyyy more likely than ALS in my 30’s. And how many people do you know have been struck by lightning? Lol.

Anyways, this is my way of just trying to get through to Aug 20th. It’s been tough   

[liveinthenow 15]

@MamaBear I know exactly what you mean. And even though we can try and convince ourselves with the statistics it doesn't really help that much because the real issue is our mind going "what if". 

Good luck holding out until your neuro appointment -  the waiting is a killer, we all just want to be able to go back to enjoying life and not constantly being preoccupied with these fears. I look at this list and it reassures me for a while so hopefully that helps in the waiting. 

[wingo22 1]

On 7/14/2019 at 1:04 AM, liveinthenow said:

Hi all,

I had another extremely irrational a*s freak-out to my dad today (poor guy must be getting sick of it by now!), mainly about body wide twitches and weird sensations and cramps and stuff like that, and he gave me a pretty exhaustive list of things you would NOT be able to do if you had TRUE weakness/immobility/unusability of a muscle.

First of all, again he clarified that motor diseases only affect power - simple as that. So if there is no power deficit, it's actually impossible to have a motor diseases regardless of what you and I have read online. Any reflex-related stuff is a result of an interrupted neural loop which again would have power-related consequences. So whenever you feel a twitch in the following areas, remember that if you can still do the following things, you are not weak and the twitches are just anxiety! 

Hands:

Early weakness in hands presents as lack of coordination, so can you:

Do up buttons? Type on a computer? Pull up a zipper? Eat with a knife and fork? Play piano or guitar or any other instrument (assuming you already knew how!)? Make a tight fist (this might be harder earlier in the morning)? Spread your hand out? Touch your fingers to your thumb rapidly? Pick up coins/small objects from a table? Sew/knit? Use chopsticks (again if you already could!)? Open a door handle? Write?

Arms and shoulders

Can you: 

Do push ups? Pull ups? Lift objects from high places? Hang paintings? Lift your arms or other objects above your head? Lift and carry grocery bags in from your car? Lift mugs and cups to your face? Carry your young child? Steer your car? Shrug your shoulders? 

Back/neck/abdomen

Can you:

Sit up out of bed? Lift your head off of your pillow? Do sit ups? Bend over without your chin flopping towards your chest? Sit up straight/have a good posture? Do leg lifts/any other core-related exercises?

Legs and feet

Can you:

Wiggle your toes? Walk on your toes and heels? Do calf raises? Stand up out of a (not too low) chair? Do squats? Jump?  Run/walk up or down stairs? Tap your toes on the ground with your heel on the ground? Rotate your feet outwards and inwards? Go for a run without tripping consistently? Ride your bike? 

Mouth/tongue

Can you:

Wiggle your tongue in your mouth (side to side and up and down)? Run your tongue around your teeth? Push your tongue against your cheeks? Stick your tongue out and pull it up towards your nose? Sing along to any song with changes in range and volume? Swallow without consistently regurgitating food and liquids up your nose (as if you've laughed while drinking milk)? 

 

These are all things that would be IMPOSSIBLE if you had true weakness of any of these muscle groups. This sure helped me and I hope it helps some people achieve clarity about their fears. Here is also a great link that substantiates this list. https://clinicalgate.com/proximal-distal-and-generalized-weakness/

 

Hope everyone has a peaceful day,

Matt 

 

EDIT: An interesting observation is that after a beer or two, or when I'm distracted with something interesting, my symptoms seem to almost disappear - they wouldn't go away if it were truly something sinister! 

 

Great post Matt! 

How do you get over those feelings or sensations of perceived weakness though? Like I can still do everything I could before, but I get these sensations and this weird feeling that I am weak. Obviously overthinking probably doesn’t help. 

Any tips?

[MamaBear 2]

Wingo, I have the same issue. But then I just think of all the things I do absentmindedly that clearly show strength. I just shaved my legs no problem (sorry TMI). That’s a fine motor skill using my supposedly weak hand.

The other day my son who weighs 50 pounds asked me to carry him and I did for about 100 yards and when I put him down, my husband said, wow...yeah you really have als 🙄. Stuff like that. Stuff you do when you’re not even thinking about it. 

I have also been walking daily on the treadmill.  It’s been a few months but I’ve worked up to walking much faster and much longer than when I started...even jogging some now.  In other words, I’ve gotten stronger, slowly but surely.  A good sign I think.  

What things have you done recently *without thinking* that show strength?  Those are the things I direct my mind too when I start to worry. It helps some. 

[Ekr4eva 19]

@liveinthenow

This is a life saving post!! Of course we all seek reassuring factoids about ALS and how slim the chances are, but unfortunately we all have the minds that go, “well what if I’m that .0001% that has it?”. We have an irrational fear that most “normal” people do not. Most people can brush off bodily changes as facts of life, but we obsess over that bodily change and assume it’s the worst case scenario always. Just remember this is all our anxiety manifesting into something that isn’t real. It is so much easier to say then to actually do, but I swear it is. I’m currently in the throws of ALS due to body-wide twitching, and now a undiagnosed heart condition. It’s a tangled web we weave, but I keep trying to focus on the here and now, and not the “what if’s” as @liveinthenowstated.

Good luck everyone on this journey! We will get out on the other side stronger than before, this I promise!!!

[liveinthenow 15]

@wingo22 exercising (with the intent to get fit rather than test my strength) has helped a lot, but also seeing a therapist to get over the anxiety is probably the number one thing. The perceived weakness is just another manifestation of it and proof that our minds are insanely powerful!

@MamaBear my dad does the exact same thing when I can do something that I wouldn't be able to do if I was sick! 😂 We recently went for a bike ride where we raced up a hill, and after I beat him up there he said "wow if you've got mnd, I must have even WORSE mnd!". I wish it was so easy for us to see ourselves from a rational perspective like our family do haha 

@Ekr4eva you are so correct, focusing on the here and now is the way to go. Roman Emperor Marcus Aurelius in his book "Meditations" that the past has already happened, the future is uncertain, the only thing we can control is the present moment. And we are all going to get through this HA! 

[superscared 0]

Sorry if this brings the thread down. I am searching up and down this forum for help at the moment as I'm having a major panic. I have had weakness in my upper bicep for a while now. Probably a year. It has got to the point that my shoulder and forearm hurt from compensating for the lack of bicep strength. I have trouble lifting items up to the left that I can lift perfectly fine with my right arm. I am constantly googling which of course doesn't help but I am desperate for answers. The worst thing is I wasn't worried about the weakness until I got twitches and that was what led me to ALS. So I know I'm not imagining the weakness because it was there first. Now all I can think is my kids aren't going to have a Mum soon. Matt I am so grateful for your post but I have read online that the weakness can just be a little bit and not an inability to do stuff?? I wish I could un-see it now :(((((

[Holls 1486]

13 hours ago, superscared said:

Sorry if this brings the thread down. I am searching up and down this forum for help at the moment as I'm having a major panic. I have had weakness in my upper bicep for a while now. Probably a year. It has got to the point that my shoulder and forearm hurt from compensating for the lack of bicep strength. I have trouble lifting items up to the left that I can lift perfectly fine with my right arm. I am constantly googling which of course doesn't help but I am desperate for answers. The worst thing is I wasn't worried about the weakness until I got twitches and that was what led me to ALS. So I know I'm not imagining the weakness because it was there first. Now all I can think is my kids aren't going to have a Mum soon. Matt I am so grateful for your post but I have read online that the weakness can just be a little bit and not an inability to do stuff?? I wish I could un-see it now :(((((

The twitches are usually anxiety related and muscle over use and tension..the thing with ALS is it's very fast moving... So you wouldn't have a good day then a bad week then a good week etc...it would be failure to complete loss of muscle to it moving... To me it sounds like you have a pulled muscle and you keep straining it. When I had the weakness fear, mine was my leg.. I went to my pcp. They can do tests for clinical weakness. It doesn't take long at all! Please go. This will give you extreme peace of mind. Have you ever brought this up in an appointment? 

I waited awhile to go to my Dr out of fear but when I did, it helped me move on from this fear. 

[superscared 0]

Thing is I didn't feel like I had anxiety when the twitches started. I do now because I googled what they could mean 😞

I'm scared to go to the docs and actually in a weird situation thanks to Covid I'm not at my usual place of residence so I'm not even registered to a doctor anywhere nearby at the moment 

[Holls 1486]

7 hours ago, superscared said:

Thing is I didn't feel like I had anxiety when the twitches started. I do now because I googled what they could mean 😞

I'm scared to go to the docs and actually in a weird situation thanks to Covid I'm not at my usual place of residence so I'm not even registered to a doctor anywhere nearby at the moment 

I had this worry for two years and it ruined and took so much from me. My children's birthdays, holiday's, vacations. Even if I was a little better it was always in the back of my mind. My absolute best advice to you is to go to a Dr. I saw a physicians assistant. It takes maybe 10 min. They pull and push on you to evaluate any clinical weakness. After I had my appointment the worry faded.. Bec I knew I was fine. I know it's a strange time with covid but a Drs office will def be taking precautions. Hugs. I hope you do this soon so you can peacefully move on.