I was doing so well over ALS

[mindyanajones]

I haven't been on here for a couple weeks. I hadn't been thinking too much about my symptoms. I was kind of just going with it. My tongue/speech issue resolved itself, and I was finally starting to think it's not ALS. I'm fine. And now I've been thinking too much about the fact that my finger stiffness and hand coordination problems haven't resolved since they started, and now I'm seeing atrophy again in a part of my arm just above my wrist whenever I squeeze my hand into a fist. It just looks far deeper than on my right, and now I'm starting to spiral again. I've been going to therapy and taking my medication, and I just don't understand why I can't get passed this. It's so frustrating and terrifying, and I'm sick of it.

[Fishmanpa]

I've been going to therapy and taking my medication, and I just don't understand why I can't get passed this. It's so frustrating and terrifying, and I'm sick of it.

Kudos for doing the right thing. Healing from mental illness is in many ways like healing from any serious illness. Give it time. Do the work. It's difficult at first and you may take a step forward and two back but eventually it's two forward and one back and then three forward etc. Keep up the good work.

Positive thoughts

[mindyanajones]

Kudos for doing the right thing. Healing from mental illness is in many ways like healing from any serious illness. Give it time. Do the work. It's difficult at first and you may take a step forward and two back but eventually it's two forward and one back and then three forward etc. Keep up the good work.

Positive thoughts

Thanks Fishmanpa. It's just so frustrating when I think I'm finally getting over it, and I just find something else to wind myself up over. I've even been doing the CBT from that Australian website specifically for Health Anxiety, and I guess I just was hoping I'd be feeling better more quickly than I have been. As of right now, it's as if I'm just existing until the next major freak out. Thank you for the encouragement, though. I'll try to remember it.

[nivekc251]

Stop looking for stuff because your brain will convince you that you've found something sinister. Trust me I've been on the ALS rollercoaster and I know it's not fun at all. I twitch 24/7 in my calves. Once upon a time I felt every twitch ,but now I have just basically tuned them out and move on with my life. It helps when you realize that your ALS scare has become a phobia. You can get over this! Keep up the good work and stay positive and busy!

[Carys]

Its true - things take time to resolve, and lots of effort. You are putting in the effort and taking the positive steps needed, good on you!:yesyes:

However, don't think that everything will just disappear into a poof of smoke and a ever present oasis of fear-less happiness LOL The feelings and thoughts, and ways of responding to situations (particularly bodily symptoms in your case) have been learnt and engrained for a long time. It will take a long time to reverse the process as your brain has been trained a certain way, with certain responses to triggers.

This isn't a step backwards, when blips occur, as you now have a good set of skills to deal with the new symptoms more quickly! The fact that some ALS 'symptoms' went, mean that now you know things will go once you work on it, and these symptoms will disappear too in time.

Keep going, keep plugging away and in time the dividends will be paid. HA fears will become less frequent, and when they do occur you will have learnt new ways to squash them.

[tan235]

Just for the record if I put both hands into a fist I have a pit in my right but not my left, that unfortunately freaked me out for a second but I imagine it's fairly normal - we are not built to be the same on both sides.
Just ignore it - if it is ALS then there's nothing you can do anyway!
(ha sorry I know that doesn't help but sometimes we have to laugh right!!)

[androidz]

Just for the record if I put both hands into a fist I have a pit in my right but not my left, that unfortunately freaked me out for a second but I imagine it's fairly normal - we are not built to be the same on both sides.
Just ignore it - if it is ALS then there's nothing you can do anyway!
(ha sorry I know that doesn't help but sometimes we have to laugh right!!)

Yeah, me too. We're not perfectly symmetrical, if we were we would probably be top models :).

[mindyanajones]

Just for the record if I put both hands into a fist I have a pit in my right but not my left, that unfortunately freaked me out for a second but I imagine it's fairly normal - we are not built to be the same on both sides.
Just ignore it - if it is ALS then there's nothing you can do anyway!
(ha sorry I know that doesn't help but sometimes we have to laugh right!!)

I'm really glad that you said that, because I had my mom make a fist, too, and she has the same thing. She's right-handed, and I think it's deeper in the hand you're most dominant in which makes sense since mine is in my left. And you're right, we're not supposed to be perfectly symmetrical. This, actually, made me feel a lot better. It's like I need to logic myself out of these spirals. I've been trying to tell myself exactly what you said, if I've got it, I'm screwed, anyway, so I might as well try to relax. Unfortunately, it's easier said than done. :doh:

---------- Post added at 18:26 ---------- Previous post was at 18:22 ----------


Its true - things take time to resolve, and lots of effort. You are putting in the effort and taking the positive steps needed, good on you!:yesyes:

However, don't think that everything will just disappear into a poof of smoke and a ever present oasis of fear-less happiness LOL The feelings and thoughts, and ways of responding to situations (particularly bodily symptoms in your case) have been learnt and engrained for a long time. It will take a long time to reverse the process as your brain has been trained a certain way, with certain responses to triggers.

This isn't a step backwards, when blips occur, as you now have a good set of skills to deal with the new symptoms more quickly! The fact that some ALS 'symptoms' went, mean that now you know things will go once you work on it, and these symptoms will disappear too in time.

Keep going, keep plugging away and in time the dividends will be paid. HA fears will become less frequent, and when they do occur you will have learnt new ways to squash them.

And that's what I've tried to remember. That the fact that some symptoms have resolved, or at the very least, they seem to come and go, that that points away from ALS, but I've got Special Snowflake Syndrome where I think 'what if I'm a special case', 'what if this is something new with ALS'.

I feel like I've only been dealing with this for a few months, so it's like why isn't this going away faster when I've only been like this since February, but habits are easily made and difficult to break, unfortunately. I'm trying, and I've been managing, so I guess I should take my wins where I find them. Thank you for your response!

---------- Post added at 18:27 ---------- Previous post was at 18:26 ----------


Yeah, me too. We're not perfectly symmetrical, if we were we would probably be top models :).

The more people that tell me this the better I feel, but that's the reassurance seeking I know isn't healthy. I appreciate your comment though all the same!

---------- Post added at 18:29 ---------- Previous post was at 18:27 ----------


Stop looking for stuff because your brain will convince you that you've found something sinister. Trust me I've been on the ALS rollercoaster and I know it's not fun at all. I twitch 24/7 in my calves. Once upon a time I felt every twitch ,but now I have just basically tuned them out and move on with my life. It helps when you realize that your ALS scare has become a phobia. You can get over this! Keep up the good work and stay positive and busy!

The twitches I've definitely been able to ignore now that I know they're a late symptom, and they actually have improved. They still happen, but it's not AS bad as it was. A lot of my 'symptoms' have resolved or at the very least seem to come and go, but it's hard to make my brain believe I'm really okay. The ALS rabbit hole is really the worst. Thank you for responding!

[mindyanajones]

I know people like to get updates after appointments, so I figured I'd post about my neuro appointment today.

She did a pretty thorough neuro exam, and she found nothing wrong or abnormal.

Which of course is probably a no brainer to everyone else, but hey, sometimes you need to hear it from the professional. She's still sending me for an MRI because I've reported vision changes the past couple weeks where I've been seeing flashing lights on my peripheral and have blurriness and trouble focusing in my right eye, so she wants to rule out possible tumor or demyelination that could suggest possible risk for MS. So whenever that happens, I'll update with results from that.

I'm feeling better, not 100% but better. I'm still having weird body shit going on, and it's still uncomfortable to feel like your hands don't want to work the way you want them to or you're shaking whenever you squeeze your hands. I'm trying not to analyze my body for atrophy and trying to remember that we're not meant to be perfectly symmetrical because we're not robots.

Unfortunately, as much as I had hoped it would be, seeing the neurologist was not the fix all where I would walk away without any more worry about what's going on with me, but I do feel a little better. I'm hoping if I just continue on with life, eventually I'll stop thinking about it 24/7 and things will just settle back to normal. I don't want to be the person who struggles with this for years and years.

[nomorepanic]

Hi

This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

[mindyanajones]

Hi

This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Whoops sorry! Thanks

[mindyanajones]

So I've discovered today that when I curl my ring finger and my pinky finger down on my right hand, I can't lift my middle finger, at all, unless I uncurl my other fingers a bit. It's like it's paralyzed unless it has full range of my other fingers. That's not the case on my left hand. I showed my mother, and she has full range of her middle finger when she tries the same thing on both hands. Even just trying to straighten my middle finger out when my others are curled in makes my hand start shaking. And I'm kind of freaking out about it.

[nomorepanic]

Do you mean lift it up or bend it down?

[mindyanajones]

Do you mean lift it up or bend it down?

Lift it up. If I lay both hands down flat on a surface, curl my ring and pinky fingers down, on my right hand I can only my thumb and index finger but not my middle finger. On my left hand, if I do the same thing, I can move all three. I wish I had a better way to explain it because I feel like I'm not doing that very well.

[nomorepanic]

It sounds like one of those things that some people just can't do - nothing sinister though.

[mindyanajones]

It sounds like one of those things that some people just can't do - nothing sinister though.

I hope so. It sounds like a really dumb thing to even worry about, but when your one big HA thing is ALS, then it seems like it's suddenly a failure to do something when I honestly can't even remember if I've ever been able to do that before because I've never thought to pay attention.

[nomorepanic]

You are focusing on things too much I think to be honest.

[mindyanajones]

You are focusing on things too much I think to be honest.

I probably am, yeah. It's not like I can't move my finger in any other situation. I can still type just fine, hold things just fine. If there was something actually wrong with it, I'd probably have lost the ability to move it all together.

[nomorepanic]

ok well try and let the fear go now

[Fishmanpa]

It's not like I can't move my finger in any other situation. I can still type just fine, hold things just fine. If there was something actually wrong with it, I'd probably have lost the ability to move it all together.

From this link (http://www.nomorepanic.co.uk/showthread.php?t=196071)....

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

[mindyanajones]

From this link (http://www.nomorepanic.co.uk/showthread.php?t=196071)....

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.