ALS fear

[Cubanborn87 42]

3 minutes ago, clearhead said:

You understand that ALS twitching is weak and not noticed by most and is accompanied with or after clinical weakness. Right?

From what I have read in most cases that is exactly right. Problem is if I have ALS at 31, that wouldn't be most cases. So, I would not count out being one of those rare cases that started with twitching.

[clearhead 129]

You would be handicapped by now. Clinical weakness.

[Cubanborn87 42]

5 minutes ago, clearhead said:

You would be handicapped by now. Clinical weakness.

What's the golden window to be cleared? I have heard 2 years , 3 years , even 5 years. What's your opinion on that ?

[clearhead 129]

Cleared? Twitching is secondary to clinical weakness.

[Meghansherf 8]

16 minutes ago, Cubanborn87 said:

I been getting that a lot lately, it is very noticeable when I am going down the stairs . My legs even get shaky at times. Also when driving , my leg was driving me nuts. 

Do you get it both sides? Mine is just my left leg 

[Cubanborn87 42]

5 minutes ago, Meghansherf said:

Do you get it both sides? Mine is just my left leg 

I get it both sides , but my left leg is a lot more frequent. A lot more, its probably 75-25 left side 

[clearhead 129]

10 minutes ago, Cubanborn87 said:

What's the golden window to be cleared? I have heard 2 years , 3 years , even 5 years. What's your opinion on that ?

There is a BIG difference between the two. ALS twitches are caused by dying muscle tissue as the nerve endings disconnect between the muscle and brain which in return cause the muscle to die and shrink. This is a SECONDARY action and it ONLY happens AFTER the muscle has started it’s dying process, NOT before.

So with that, ALS twitches (by the time you notice them or IF you even notice them at all) will most certainly have some kind of weakness or immobility of the muscle involved at the same time. Also, ALS twitches and symptoms usually start in a hand or a foot and will migrate from that point forward progressively and continually and relentlessly. They will NOT be random twitches like BFS has. You won’t have a twitch in your finger one second, and a twitch on your back the next and a twitch in your calf the next and a twitch on your tongue the next with ALS. ALS starts in one spot and progresses continually through your body, not at random. ALS twitches are usually very fine and again, have WEAKNESS associated with them.

[Cubanborn87 42]

8 minutes ago, clearhead said:

Cleared? Twitching is secondary to clinical weakness.

What I mean for twitchers that freak out about ALS. What is the golden window, that you could say. Once you make it past this much time there is absolutely zero percent chance you have it 

[Cubanborn87 42]

6 minutes ago, clearhead said:

There is a BIG difference between the two. ALS twitches are caused by dying muscle tissue as the nerve endings disconnect between the muscle and brain which in return cause the muscle to die and shrink. This is a SECONDARY action and it ONLY happens AFTER the muscle has started it’s dying process, NOT before.

So with that, ALS twitches (by the time you notice them or IF you even notice them at all) will most certainly have some kind of weakness or immobility of the muscle involved at the same time. Also, ALS twitches and symptoms usually start in a hand or a foot and will migrate from that point forward progressively and continually and relentlessly. They will NOT be random twitches like BFS has. You won’t have a twitch in your finger one second, and a twitch on your back the next and a twitch in your calf the next and a twitch on your tongue the next with ALS. ALS starts in one spot and progresses continually through your body, not at random. ALS twitches are usually very fine and again, have WEAKNESS associated with them.

I get both I get the medium range to violent ones. But I also get the fine ones. Specially in my foot , the ones in my foot are very fine. But ever since that left foot of mine has gone numb/tingling it has been a hot spot. It's always twitching. The right foot twitches as well but not as often 

[clearhead 129]

5 minutes ago, Cubanborn87 said:

I get both I get the medium range to violent ones. But I also get the fine ones. Specially in my foot , the ones in my foot are very fine. But ever since that left foot of mine has gone numb/tingling it has been a hot spot. It's always twitching. The right foot twitches as well but not as often 

ALS twitches are a secondary reaction from dying tissue and how hard do you thing dying tissue can twitch? Not very hard at all. Most people diagnosed with ALS never even noticed the twitches and it is common for a doctor to use a type of strobe light to see them with the naked eye because they are so fine and weak. People with ALS “usually go see a doctor because they are falling down or can’t grip and hold their coffee cup anymore or have difficulty getting out of bed or up from a chair.

[Cubanborn87 42]

15 minutes ago, clearhead said:

ALS twitches are a secondary reaction from dying tissue and how hard do you thing dying tissue can twitch? Not very hard at all. Most people diagnosed with ALS never even noticed the twitches and it is common for a doctor to use a type of strobe light to see them with the naked eye because they are so fine and weak. People with ALS “usually go see a doctor because they are falling down or can’t grip and hold their coffee cup anymore or have difficulty getting out of bed or up from a chair.

Can you see the ones in your foot? The very fine ones in my foot, I can't see .

[clearhead 129]

How do you know it’s twitching if you can’t see it?

[Kelsbels 3]

GIRL. I AM TWITCHING. My hands cramp up and my thumb will get stiff and when that happens I notice a visable and annoying twitch in my thumb pad. My calf’s twitch. My eye twitches constantly and a spot on my back. My foot will twitch and I’ve also noticed it in my tongue. I get nervous about ALS and MS constantly. But reading about ALS and researching it more compared to HA or BFS it throws my worries out of the window. I am still in control of my muscles. I can still use my hand and I am still capable of doing normal ADLs. My doctor is currently referring me to get EMG on my hands to rule out carpal tunnel. Whenever I get stressed about it I do yoga. Then afterwords I tell myself that people with ALS can’t do yoga. (Which is sad) but it also lets me know that I don’t have ALS. Head up, chick. Anxiety is a beast. My first fear was MS and it’s slowly progressed to ALS and once your mind grips diseases it’s hard to brush them off. That’s how I ended up here! 

[Cubanborn87 42]

7 hours ago, clearhead said:

How do you know it’s twitching if you can’t see it?

Like on my soles, I can feel the little worms at times. The very fine twitches. Most of the time I am twitching I am not looking at them but I can feel them.

[Cubanborn87 42]

@Megan Stubbs when you say lack of coordination , how noticeable is it? Could you give me some examples? I have been feeling really clumsy lately 

[Holls 1505]

Clumsy isn't als. You really have got to get ahold of this:(

[Cubanborn87 42]

1 hour ago, Holls said:

Clumsy isn't als. You really have got to get ahold of this:(

How about tremor. Slight tremor 

[Slttry 3]

I get tremors in my legs. I’m sure it’s anxiety for the both of us. They drive me nuts. 

[Cubanborn87 42]

4 minutes ago, Slttry said:

I get tremors in my legs. I’m sure it’s anxiety for the both of us. They drive me nuts. 

Same here it has been happening for the last few weeks.

[Holls 1505]

23 minutes ago, Cubanborn87 said:

How about tremor. Slight tremor 

What about it? Tremors, vibrating, shaking.. not als. It's your body being so overwhelmed with adrenaline and cortisol. It's exhausted. 

[Cubanborn87 42]

Just now, Holls said:

What about it? Tremors, vibrating, shaking.. not als. It's your body being so overwhelmed with adrenaline and cortisol. It's exhausted. 

I just noticed how recently my hands seem to be a little shaky when holding my phone and also my legs at times when going down the stairs. So that's why I was wondering. 

[Holls 1505]

12 hours ago, clearhead said:

There is a BIG difference between the two. ALS twitches are caused by dying muscle tissue as the nerve endings disconnect between the muscle and brain which in return cause the muscle to die and shrink. This is a SECONDARY action and it ONLY happens AFTER the muscle has started it’s dying process, NOT before.

So with that, ALS twitches (by the time you notice them or IF you even notice them at all) will most certainly have some kind of weakness or immobility of the muscle involved at the same time. Also, ALS twitches and symptoms usually start in a hand or a foot and will migrate from that point forward progressively and continually and relentlessly. They will NOT be random twitches like BFS has. You won’t have a twitch in your finger one second, and a twitch on your back the next and a twitch in your calf the next and a twitch on your tongue the next with ALS. ALS starts in one spot and progresses continually through your body, not at random. ALS twitches are usually very fine and again, have WEAKNESS associated with them.

This is the best post I've seen. All als worriers need to read this over and over again. 

[Iugrad91 501]

Cuban, as Holls said until you accept that it’s anxiety and not ALS you will continue to feel these things and more. Check out the list of anxiety symptoms posted on this forum. Yours are all there. You don’t have to wait for the EMG to start working on your anxiety. You read Megans summary of her neurologist appt 4hrs ago where her doc said none of those symptoms are ALS, they are the opposite, and yet you’re still here after that asking questions. You do not even consider that anxiety could be the cause of it all. Do you see how many other people have posted on here about ALS worries? And all of them were anxiety. Why are you special and the only one who’s problem could be ALS? Please please please tell your anxiety to go to hell, try to get some exercise to get rid of all that adrenaline and cortisol (even walking would help), and read up on CBT so you can start working your way out of this hole. 

[Nik Nak 8]

21 minutes ago, Iugrad91 said:

 You read Megans summary of her neurologist appt 4hrs ago where her doc said none of those symptoms are ALS, they are the opposite, and yet you’re still here after that asking questions. You do not even consider that anxiety could be the cause of it all. Do you see how many other people have posted on here about ALS worries? And all of them were anxiety. Why are you special and the only one who’s problem could be ALS? 

I wish I could agree with this so much. I’m currently sitting on the floor at work sobbing because I am 100% convinced that I have bulbar als. My mouth just isn’t functioning properly. It’s not the standard symptoms of bulbar onset they are more subtle but I literally can’t use my mouth the same way and I feel like I am going to be THAT person who has health anxiety and ends up with the super rare illness that they fear the most. It’s a nightmare I just want this worry to be over. 

[MartinT 2]

Hi all, I tend to lurk on these posts a lot but never comment. Like many of you, I am afraid every day that I have ALS because my tricep visibly twitches all day. Sometimes I have twitches in other parts of my body, as well. This has been going on for about a month; in fact, I'm twitching right now and it gets worse when my heart races (which is often). I have no clinical weakness and nothing about my current situation seems to realistically indicate a serious issue; and yet, I am terrified. Before this thing with ALS, I have been afraid that I had testicular cancer, colon cancer, lymphoma, HIV, MS, and more. I have spent thousands of dollars on medical testing that proves I'm a healthy 28 year old. At times, the panic I have about my health feels suffocating.

In the last few months, I have been coming to grips with the fact that anxiety is the root of my problems. I appreciate all of the sensical encouragement from Holls and clearhead on this post. And I wish all the rest of you the best of luck in dealing with this stuff, I know how hard it is.