ALS I have hit rock bottom

[Solafide3 18]

Hi everybody, my name is Erica and I’m a 30 year old female. I started having jerks all over my body before Christmas. Enough to move a limb, but not enough for anyone to notice. Well that went away and then came the muscle twitches. Of course I googled. ALS came up. Of course I saw BFS too, but there is so little on the internet about BFS, is it even a real thing? I know the twitches can be from anxiety, but they came at a time where I’ve been pretty calm. I was tested for nutritional deficiencies, all fine. I do strength tests daily, and can’t tell if the weakness is in my head or not.

I cry every day because the thought of leaving my 5 year old without a mother kills me. I have a neurologist appointment soon, but in the meantime I can’t function. I know if the doctor gives me the all clear I’m just going to tell myself I went too early during the disease and they couldn’t detect it. Has anybody else had muscle twitches for weeks or months? 

I pray with all my heart that the fear will just go away. I want to be happy for my family’s sake. I want to do good with my life. I feel like I should be recording stuff I want to tell my family so they can watch it after I die. They look at me like I’m nuts and do not understand how real the ALS fear is to me. I guess I just want to know that I’m not alone. I don’t know.

If you have read this, sorry for the rant, but thank you for your time. God bless you all.

 

[Cubanborn87 42]

I have had muscle twitches for a year and a half. A lot of people in this forum have them. BFS is definitely a real thing and most people that have muscle twitches suffer from BFS. It's good that you made an appointment with a neurologist, I am sure you will be ok.

 

From what I have read very few ALS patients have muscle twitches as the first symptom.

[Megan Stubbs 7]

Hi Erica. I’m also in my 30’s (32) and I have recently had some anxiety around ALS. My symptoms started as perceived weakness in my arm, moved to my legs and feet. Then came the muscle twitches. I have learned a lot from this forum and @Holls has helped me a lot as well. You’re not alone. I am still in the middle of my rabbit hole, but I’m praying daily to get over this ALS fear and start living my life again!! 

[Solafide3 18]

Thank you for y’alls reply, it means a lot to me and may God bless y’all for helping a stranger 😊

[Dixon444 7]

you cannot have your EMG too early, 70% of the nerve fibers are dead way WAY before you feel any weakness, the test would definitely pick that one up.  Weakness in ALS is the follwoing kind of weakness:

- You cannot lift and move your own finger/hand/leg etc.

- You cannot walk up the stairs without external support

- The twitching would've started way after the muscles became weak(the ALS weakness)

- You do not feel weak in ALS, here's a good quote on it

Quote

ALS is not about feeling, it's about failing

 

[Megan Stubbs 7]

1 minute ago, Dixon444 said:

you cannot have your EMG too early, 70% of the nerve fibers are dead way WAY before you feel any weakness, the test would definitely pick that one up.  Weakness in ALS is the follwoing kind of weakness:

- You cannot lift and move your own finger/hand/leg etc.

- You cannot walk up the stairs without external support

- The twitching would've started way after the muscles became weak(the ALS weakness)

- You do not feel weak in ALS, here's a good quote on it

 

Such Good Words!! 

[A11yance 43]

2 minutes ago, Dixon444 said:

you cannot have your EMG too early, 70% of the nerve fibers are dead way WAY before you feel any weakness, the test would definitely pick that one up.  Weakness in ALS is the follwoing kind of weakness:

- You cannot lift and move your own finger/hand/leg etc.

- You cannot walk up the stairs without external support

- The twitching would've started way after the muscles became weak(the ALS weakness)

- You do not feel weak in ALS, here's a good quote on it

 

Now if only you can apply that to your own thread

[Dixon444 7]

Just now, A11yance said:

Now if only you can apply that to your own thread

I can and I definitely see the irony in it.. It's just the health anxiety that bothers us all here you know??? It's like and endless hole of pointless worry even tho we're sure we're fine. Imma seek a psychologist soon :)))

[Cubanborn87 42]

23 minutes ago, Dixon444 said:

you cannot have your EMG too early, 70% of the nerve fibers are dead way WAY before you feel any weakness, the test would definitely pick that one up.  Weakness in ALS is the follwoing kind of weakness:

- You cannot lift and move your own finger/hand/leg etc.

- You cannot walk up the stairs without external support

- The twitching would've started way after the muscles became weak(the ALS weakness)

- You do not feel weak in ALS, here's a good quote on it

 

Great Explanation!!! Your post has given me hope man. Because my left leg has been tingling and feeling odd for weeks now. I can move and everything, no stumbling , etc. But it has me very worried. 

[clearhead 129]

27 minutes ago, Dixon444 said:

you cannot have your EMG too early, 70% of the nerve fibers are dead way WAY before you feel any weakness, the test would definitely pick that one up.  Weakness in ALS is the follwoing kind of weakness:

- You cannot lift and move your own finger/hand/leg etc.

- You cannot walk up the stairs without external support

- The twitching would've started way after the muscles became weak(the ALS weakness)

- You do not feel weak in ALS, here's a good quote on it

 

Excellent!!!

[Solafide3 18]

I think what really bothers everybody is there are things going on with our body that cant be confirmed with a negative or positive test result. Has anybody else been on the ALS forums and read the personal stories? Not a good thing to do. I always read things that say it started with twitching or a minimum of 3 years is needed to rule in favor of BFS. I’ll be in the looney house by then. We all just need to let go.. but question is how. How frequent are yalls twitches? Mine is about every 10 seconds. My elbow is a big hotspot, also above my knees

[Cubanborn87 42]

5 minutes ago, Solafide3 said:

I think what really bothers everybody is there are things going on with our body that can be confirmed with a negative or positive test result. Has anybody else been on the ALS forums and read the personal stories? Not a good thing to do. I always read things that say it started with twitching or a minimum of 3 years is needed to rule in favor of BFS. I’ll be in the looney house by then. We all just need to let go.. but question is how. How frequent are yalls twitches? Mine is about every 10 seconds. My elbow is a big hotspot, also above my knees

Wow, that is scary. That's very concerning. I didn't realize that was the case. I get them very often, sometimes it's a few a minute sometimes is a few every couple of minutes or hours and of course sometimes it's as often as yours. 

[A11yance 43]

6 minutes ago, Solafide3 said:

I think what really bothers everybody is there are things going on with our body that cant be confirmed with a negative or positive test result. Has anybody else been on the ALS forums and read the personal stories? Not a good thing to do. I always read things that say it started with twitching or a minimum of 3 years is needed to rule in favor of BFS. I’ll be in the looney house by then. We all just need to let go.. but question is how. How frequent are yalls twitches? Mine is about every 10 seconds. My elbow is a big hotspot, also above my knees

I will agree. The worst thing about ms and als are there are 0 tests for them. But my twitches are not that often maybe every 5-10 min

[clearhead 129]

11 minutes ago, Solafide3 said:

I think what really bothers everybody is there are things going on with our body that cant be confirmed with a negative or positive test result. Has anybody else been on the ALS forums and read the personal stories? Not a good thing to do. I always read things that say it started with twitching or a minimum of 3 years is needed to rule in favor of BFS. I’ll be in the looney house by then. We all just need to let go.. but question is how. How frequent are yalls twitches? Mine is about every 10 seconds. My elbow is a big hotspot, also above my knees

This contradicts what most say on this site. The twitching is after muscle failure.

[Megan Stubbs 7]

11 minutes ago, Solafide3 said:

I think what really bothers everybody is there are things going on with our body that cant be confirmed with a negative or positive test result. Has anybody else been on the ALS forums and read the personal stories? Not a good thing to do. I always read things that say it started with twitching or a minimum of 3 years is needed to rule in favor of BFS. I’ll be in the looney house by then. We all just need to let go.. but question is how. How frequent are yalls twitches? Mine is about every 10 seconds. My elbow is a big hotspot, also above my knees

This is the first I’ve heard of people on the ALS forums saying it started with twitching. I’ve heard quite the opposite from people who’ve been on there asking questions. It seems most people with ALS have told others (on here) that twitching doesn’t come until much later. And some have said they wish google didn’t even suggest ALS when we search twitching and weakness because it’s so much more than that. Also, the number ONE reason behind muscle twitching is Anxiety/stress. Not ALS. 

[A11yance 43]

6 minutes ago, Megan Stubbs said:

This is the first I’ve heard of people on the ALS forums saying it started with twitching. I’ve heard quite the opposite from people who’ve been on there asking questions. It seems most people with ALS have told others (on here) that twitching doesn’t come until much later. And some have said they wish google didn’t even suggest ALS when we search twitching and weakness because it’s so much more than that. Also, the number ONE reason behind muscle twitching is Anxiety/stress. Not ALS. 

But I would say most of us worry that we (anxiety people) are hypersensitive to symptoms and might notice things that others wouldnt

[Holls 1496]

21 minutes ago, Solafide3 said:

I think what really bothers everybody is there are things going on with our body that cant be confirmed with a negative or positive test result. Has anybody else been on the ALS forums and read the personal stories? Not a good thing to do. I always read things that say it started with twitching or a minimum of 3 years is needed to rule in favor of BFS. I’ll be in the looney house by then. We all just need to let go.. but question is how. How frequent are yalls twitches? Mine is about every 10 seconds. My elbow is a big hotspot, also above my knees

I've been on the als boards and not one personal story says it started with twitching. And three years to see if it's als or bfs? Bull! You will know.its als Bec a muscle stops working.. what in the world!!!!!!!!! Y'all have got to stop this. Als is about failing PERIOD!!!!! Do whatever y'all need to do to move on...please. but yall are just getting one another false information and fueling y'all's anxious minds. 

[Holls 1496]

1 minute ago, A11yance said:

But I would say most of us worry that people without anxiety and have ALS maybe didn’t notice the signs/symptoms like us with anxiety would

Yes they did. You notice when shit stops working. 

[A11yance 43]

1 minute ago, Holls said:

Yes they did. You notice when shit stops working. 

But i meant holls that maybe some individuals did experience twitching prior to failure because they are more hypersensitive? I don’t know like I said I overthink everything anyway 😔

[Holls 1496]

Just now, A11yance said:

But i meant holls that maybe some individuals did experience twitching prior to failure because they are more hypersensitive? I don’t know like I said I overthink everything anyway 😔

Nooooooo!!! Twitching in als is after muscle death. 

[Jremtx 120]

@Holls at this point and I hate to say this but let him believe he has “A” at this point. 

🤷‍♂️ 

 

Ill see you on Thursday buddy to say, 

 

“I told you so.”

[Megan Stubbs 7]

1 minute ago, Holls said:

Yes they did. You notice when shit stops working. 

Agree with @Holls  anxiety or not you notice the  twitching. You would notice things not being right. The difference is. People with anxiety make up 98% of our symptoms because we can’t let it go!!!!!!! We plant seeds in our heads, get obsessed with them and then can’t move past them. Twitching is such a common thing. My husbands back was twitching earlier today and he said “hey just FYI my back is twitching right now” and then he moved on... because he doesn’t get obsessed with it like I do!! Every one has twitching. We just notice it more because we are worried about it. 

[A11yance 43]

2 minutes ago, Jremtx said:

@Holls at this point and I hate to say this but let him believe he has “A” at this point. 

🤷‍♂️

 

Ill see you on Thursday buddy to say, 

 

“I told you so.”

Sorry 🙁

[Jremtx 120]

@A11yance lol don’t be sorry to me man. Say sorry to yourself. Say sorry to yourself for putting yourself through this. 

[clearhead 129]

20 minutes ago, Holls said:

I've been on the als boards and not one personal story says it started with twitching. And three years to see if it's als or bfs? Bull! You will know.its als Bec a muscle stops working.. what in the world!!!!!!!!! Y'all have got to stop this. Als is about failing PERIOD!!!!! Do whatever y'all need to do to move on...please. but yall are just getting one another false information and fueling y'all's anxious minds. 

Thanks Holls!