Muscle twitches

[Solafide3 18]

So I know everybody keeps saying muscle twitches are secondary to weakness. But I keep finding stories on the ALS forum and on the ALS Foundation website that a lot of young people, their first sign was twitching

One guy was in the military and he was still doing his PT training for months before he got weakness! He just had twitching! This is why I cannot accept that I am ok. I do not know what to believe.

My doc said it was impossible for me to have ALS because I am only 30. I know Stephen Hawking was 21 when he got the disease. I read a renowned neurologist’s testimony about having to diagnose people in their 20s. I wish I had never heard of it

[Cubanborn87 42]

From what I understand the twitching as a first sign is extremely rare. Not to say that's impossible , but is pretty rare for twitching to be the first sign 

My neurologist does not worry about twitching at all. He basically said it's basically never the first sign.

Now I don't know about anything about people being diagnosed in their 20s having twitching only. I don't see why it would be any different than someone in their 40s 50s etc. The disease should present itself in similar manners no matter the age.

I have had twitching for 22 months already and I still haven't seen any real weakness. 

[Solafide3 18]

2 minutes ago, Cubanborn87 said:

From what I understand the twitching as a first sign is extremely rare. But to say that's impossible , but is pretty rare for twitching to be the first sign 

My neurologist does not worry about twitching at all. He basically said it's basically never the first sign.

Now I don't know about anything about people being diagnosed in their 20s having twitching only. I don't see why it would be any different than someone in their 40s 50s etc. The disease should present itself in similar manners no matter the age.

I have had twitching for 22 months already and I still haven't seen any real weakness. 

Isn’t it crazy how we feel comfortable reassuring other people they don’t have ALS (because we honestly believe they don’t have ALS), yet no matter how many doctor visits we have, we can never seem to convince ourselves? Health Anxiety is the devil I swear

[Cubanborn87 42]

7 minutes ago, Solafide3 said:

Isn’t it crazy how we feel comfortable reassuring other people they don’t have ALS (because we honestly believe they don’t have ALS), yet no matter how many doctor visits we have, we can never seem to convince ourselves? Health Anxiety is the devil I swear

I know exactly what you mean. The anxiety is almost always right around the corner. You can come here and read something and feel great and an hour later be a complete mess. 

The thing I will recommend is to not Google or research anymore. Come here instead when you have a question or doubt. That's what I have done the last 2 weeks and it has helped my greatly. 

[Solafide3 18]

35 minutes ago, Cubanborn87 said:

I know exactly what you mean. The anxiety is almost always right around the corner. You can come here and read something and feel great and an hour later be a complete mess. 

The thing I will recommend is to not Google or research anymore. Come here instead when you have a question or doubt. That's what I have done the last 2 weeks and it has helped my greatly. 

Do you ever get what feel like cramps in your hands and feet?

[Holls 1505]

If you are on the als forum they all say no to that. And you are only hurting yourself reading all of those stories. Please stop 

[Solafide3 18]

3 minutes ago, Holls said:

If you are on the als forum they all say no to that. And you are only hurting yourself reading all of those stories. Please stop 

I’m sorry Holls, thank you for reading and replying

[Cubanborn87 42]

26 minutes ago, Solafide3 said:

Do you ever get what feel like cramps in your hands and feet?

I don't know, I get these weird muscle contractions that make my fingers move at times or my toes curl.

[sTeaLth 238]

I had twitches EVERYWHERE once I saw some stories on ALS. For months and months. I would get scared by them and then they would worse.  Once I realized my mind was doing it to me and I didn’t have ALS... they have vanished. It will happen to you as well. You don’t have it. It just comes down to how long until you realize that before the symptoms begin to fade. 

[Leah1976 301]

I twitch constantly, have for years... I think lexapro makes it worst and honestly I don't worry about ALS at all.... I worry about BT. I don't know how some of us can worry about ALS because of twitching and I don't even care about twitching.... I feel bad for all of you guys worrying so much about ALS  I hope you can accept that you don't have that disease!

[Cubanborn87 42]

What worries me is I had twitches before j even thought about ALS. I always hear how is anxiety based and once you stop thinking about ALS it stops. But I had them for months before I even found out it could be related to ALS.

[Leah1976 301]

Just now, Cubanborn87 said:

What worries me is I had twitches before j even thought about ALS. I always hear how is anxiety based and once you stop thinking about ALS it stops. But I had them for months before I even found out it could be related to ALS.

well that can apply to me too! I learned about ALS on this forum so I have been twitching for months before I learn about ALS..... you don't have it!

[Leah1976 301]

I just read this at the Mayo clinic website looking for something else and I thought of all the ALS sufferers in this forum due to twitching:

"Health Anxiety ...You may experience extreme anxiety that body sensations, such as muscle twitching or fatigue, are associated with a specific, serious illness. This excessive anxiety — rather than the physical symptom itself — results in severe distress that can disrupt your life."

https://www.mayoclinic.org/diseases-conditions/illness-anxiety-disorder/symptoms-causes/syc-20373782

[Solafide3 18]

1 hour ago, Cubanborn87 said:

What worries me is I had twitches before j even thought about ALS. I always hear how is anxiety based and once you stop thinking about ALS it stops. But I had them for months before I even found out it could be related to ALS.

I too started twitching before I knew about ALS... but other symptoms came when I read about ALS. My leg shakes when I hold it in a certain position so does my arm. Idk what’s from anxiety or not. When you have your EMG tmrw don’t be afraid to tell them to stick you with the needle somewhere else lol she only stuck me 3 times which I found out wasn’t near as many times as they usually stick you. So I’m currently going after a second opinion 🙄

[Cubanborn87 42]

2 minutes ago, Solafide3 said:

I too started twitching before I knew about ALS... but other symptoms came when I read about ALS. My leg shakes when I hold it in a certain position so does my arm. Idk what’s from anxiety or not. When you have your EMG tmrw don’t be afraid to tell them to stick you with the needle somewhere else lol she only stuck me 3 times which I found out wasn’t near as many times as they usually stick you. So I’m currently going after a second opinion 🙄

Oh wow,  when did you have yours done? 

[Solafide3 18]

1 minute ago, Cubanborn87 said:

Oh wow,  when did you have yours done? 

On the 14th of january

[Cubanborn87 42]

4 minutes ago, Solafide3 said:

On the 14th of january

How long did the EMG part take overall?

[Solafide3 18]

NCS took like 45 min.. EMG only took 5 which is why I’m not convinced by it

[Cubanborn87 42]

Just now, Solafide3 said:

NCS took like 45 min.. EMG only took 5 which is why I’m not convinced by it

Is NCS always included in EMG testing? Mine just says "EMG SHORT" 

 

[Holls 1505]

1 hour ago, Cubanborn87 said:

What worries me is I had twitches before j even thought about ALS. I always hear how is anxiety based and once you stop thinking about ALS it stops. But I had them for months before I even found out it could be related to ALS.

It's ONLY related after muscle death. I wish It would say that when we Google.. if I would have read that when I was twitching.. I wouldn't have thought twice about als. Took me months to really understand how this disease works. And that just added to my anxiety. 

[Solafide3 18]

40 minutes ago, Cubanborn87 said:

Is NCS always included in EMG testing? Mine just says "EMG SHORT" 

 

Not always. IF you don't have a nerve conduction study, don't worry about it cause it does little if anything in diagnosing ALS. EMG is the important one.

[Solafide3 18]

29 minutes ago, Holls said:

It's ONLY related after muscle death. I wish It would say that when we Google.. if I would have read that when I was twitching.. I wouldn't have thought twice about als. Took me months to really understand how this disease works. And that just added to my anxiety. 

I really think it just takes most of us substantial amount of time not deteriorating to realize we were wrong. Which sucks because I've seen so many fellow HA sufferers waste a year of their life looking for weakness. And I know I'll be one of them. I did the same thing worrying about cancer. Did the same thing worrying about AIDS. 

When I was 20 I worried about a certain virus constantly. All of the sudden I ended up getting it in the rarest way you possibly could, and on top of that had several misdiagnoses because it wasn't presenting the normal way. Thus began my never-ending health anxiety. I really want to just focus on my family.

[Cubanborn87 42]

39 minutes ago, Solafide3 said:

Not always. IF you don't have a nerve conduction study, don't worry about it cause it does little if anything in diagnosing ALS. EMG is the important one.

Oh ok, good to know. 

[Slttry 3]

So I have been twitching for two months and once I got over the twitching it has mostly gone. I still get internal vibrations in my feet/legs a lot. Do others experience once your initial stress is gone?

[Holls 1505]

1 hour ago, Slttry said:

So I have been twitching for two months and once I got over the twitching it has mostly gone. I still get internal vibrations in my feet/legs a lot. Do others experience once your initial stress is gone?

Yes I did. I had a vibrating thigh for months and months after my anxiety had calmed. My therapist said Vibrating is due to having tight muscles.. she said even though my anxiety was better i was still tense. I wasn't everyday, all day. But it was enough. Hugs try Epsom salt baths to relax.. they will go away soon enough.