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!

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.

---------- 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!

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.