I was doing so well over ALS

[mindyanajones]

From this link....

ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS.

You can still type and hold things just fine, that is not ALS.

Positive thoughts

I'm trying to remember that and rationalize everything. I wish it was easy to make my brain believe it. I keep thinking of posts I've seen of people saying it can still be small difficulties over time, and I honestly wish I'd never looked into anything related to ALS ever.

[nomorepanic]

We have never had a single member diagnosed with ALS in 17 years

[mindyanajones]

We have never had a single member diagnosed with ALS in 17 years

Which is awesome, and it should be reassuring. I'm trying really hard not to keep thinking 'well what if I'm the special snowflake.' God, this is the dumbest thing. People actually suffer with these diseases, and I'm here stressing about whether I've got it.

[Kramze]

Which is awesome, and it should be reassuring. I'm trying really hard not to keep thinking 'well what if I'm the special snowflake.' God, this is the dumbest thing. People actually suffer with these diseases, and I'm here stressing about whether I've got it.

Dude I have the exact same issue as you, regarding your anxiety. For me though it's the right arm. My symptoms are kind of like tennis elbow, except I only have a mild pain once in a while when doing certain motions with my right arm/wrist/fingers.

Also, when I hold my left and right hand together (like when you're praying), and I try and spread my fingers as much as possible, I can see that my left hand is slightly more flexible than my right. On top of that, I also feel some minor tightness in my wrist and forearm that comes and goes. I also have fasciculations all over my body, arms, legs, sometimes hands, eyes, chest and back) rarely in the tongue though. They're not present 24/7, but they do come frequently throughout the day, mostly when I'm sitting down or in my bed.

What really kickstarted my ALS fear, was when I learned of atrophy and fasciculations! I started checking for symmetry in my muscles constantly, and I noticed that when I press my forearm against my bicep (just like when you're flexing your bicep), turn my arm (so that the fist is pointing at the chest/neck) and then flex it (while turning my wrist away from the chest), I have a dent in my skin close to the outer elbow. I checked my left arm too, but the dent was not as noticeable as on the right arm, and then I panicked.

I went to the neurologist 2 times and had some blood tests done. They were fine thankfully (CPK not elevated in case of atrophy). He also did a series of reflex and strength tests, and they were all normal as well.

However I'm still kinda worried, as I sometimes feel like my dexterity is decreasing in my right hand, but sometimes it's like it's normal. I really hope that this is all in my head though, and I really want to get an EMG just in case, but I'm not sure how to tell my doctor without making it seem like I've gone completely nuts (he knows about my HA, lol).

Anyway, I guess the point of this post was to lighten your mood a little bit, and to tell you that you're not alone with your fears. But do also keep in mind that prolonged anxiety can lead to stress, and as a result it affects your nervous system, which might be the reason that some of us get benign fasciculations (however I'm not a medical professional, this is information I've gathered from my Neurologist and on the internet).

Try and set off 15 minutes of your day at a specific time, to sit down and reflect upon your fears/worries. For example at 17:00 PM to 17:15 PM or something like that. If you're out of this time frame, just tell yourself: "No, I can't think about these worries right now." Tell your fearful thought to take a seat and wait until it's 17:00 PM. It might sound a little cheesy, but by doing this, you're forcing your focus away from the negative thoughts. It might take some practice to get used to, but I've had some good time practicing this technique .

Anyway, happy thoughts.

[mindyanajones]

Dude I have the exact same issue as you, regarding your anxiety. For me though it's the right arm. My symptoms are kind of like tennis elbow, except I only have a mild pain once in a while when doing certain motions with my right arm/wrist/fingers.

Also, when I hold my left and right hand together (like when you're praying), and I try and spread my fingers as much as possible, I can see that my left hand is slightly more flexible than my right. On top of that, I also feel some minor tightness in my wrist and forearm that comes and goes. I also have fasciculations all over my body, arms, legs, sometimes hands, eyes, chest and back) rarely in the tongue though. They're not present 24/7, but they do come frequently throughout the day, mostly when I'm sitting down or in my bed.

What really kickstarted my ALS fear, was when I learned of atrophy and fasciculations! I started checking for symmetry in my muscles constantly, and I noticed that when I press my forearm against my bicep (just like when you're flexing your bicep), turn my arm (so that the fist is pointing at the chest/neck) and then flex it (while turning my wrist away from the chest), I have a dent in my skin close to the outer elbow. I checked my left arm too, but the dent was not as noticeable as on the right arm, and then I panicked.

I went to the neurologist 2 times and had some blood tests done. They were fine thankfully (CPK not elevated in case of atrophy). He also did a series of reflex and strength tests, and they were all normal as well.

However I'm still kinda worried, as I sometimes feel like my dexterity is decreasing in my right hand, but sometimes it's like it's normal. I really hope that this is all in my head though, and I really want to get an EMG just in case, but I'm not sure how to tell my doctor without making it seem like I've gone completely nuts (he knows about my HA, lol).

Anyway, I guess the point of this post was to lighten your mood a little bit, and to tell you that you're not alone with your fears. But do also keep in mind that prolonged anxiety can lead to stress, and as a result it affects your nervous system, which might be the reason that some of us get benign fasciculations (however I'm not a medical professional, this is information I've gathered from my Neurologist and on the internet).

Try and set off 15 minutes of your day at a specific time, to sit down and reflect upon your fears/worries. For example at 17:00 PM to 17:15 PM or something like that. If you're out of this time frame, just tell yourself: "No, I can't think about these worries right now." Tell your fearful thought to take a seat and wait until it's 17:00 PM. It might sound a little cheesy, but by doing this, you're forcing your focus away from the negative thoughts. It might take some practice to get used to, but I've had some good time practicing this technique .

Anyway, happy thoughts.

Yeah the fasciculations and atrophy are what set me off, too. I've learned to not worry about the fasciculations, really, since that seems to be agreed upon by everyone as a very late symptom that only occurs once you see SIGNIFICANT atrophy. But the atrophy itself is still something I've been checking for. Right now, my brain thinks my right wrist is smaller now than my left. I still can't move my middle finger of my right hand when I have my ring and pinky finger curled under. I have my MRI tomorrow, and then I'll have to schedule a follow up appointment with my neurologist. I intend to have a very long talk with her about ALS and my worries so she can fully explain things to me. I think she thinks my primary worry is actually MS when it's not.

Thank you for the advice! I'll try that, giving myself fifteen minutes to worry and no more than that. I've been doing better about not dwelling on things for hours at a time, but I still focus on it, especially when I notice something that I think is abnormal. Like right now my supposed wrist atrophy. I keep doing strength tests, like making sure I can still do a push up.

I hope we both can manage to get over this and move on with our lives. This is not something I want to spend years stuck on. As it is, three months has been more than long enough.