Als MND panic- please help me!

[jojo2316]

Oh Sarah..... thank you so much for replying. I am spiralling- totally. I will message you later xxx

[BlueIris]

Any time you want - thinking of you xx

[jojo2316]

I am still burrowing down into this damn rabbit hole! Now I’ve slipped into my awful old pattern of self checking.... doing various strength tests multiple times a day, monitoring my body for any twitches (there are several), yawning (I read this can be a symptom and then BAM I need to yawn all the time, wondering if my legs feel funny when I walk (they do a bit) and recording myself saying tongue twisters to see if they sound more slurry than last time I did recordings (last time I was in this horrid stinky hole. I have a whole library full of recordings !)
I feel mad and unhinged and very very scared.

[jojo2316]

Deeper and deeper I go. I wonder if it is something to do with coming off my AD’s a month ago? I am now panicking about asymmetry and twitching in the arches of my feet. I take comfort from this thread and can see that I worried about this very thing - foot asymmetry and twitching - over two years ago I think. Also when I focus on my feet the other symptoms seem to stop or become less obvious- the yawning- and the twitching in other places. Also I don’t think I’ve lost any strength. But..... I’m very scared right now

[Fishmanpa]

Deeper and deeper I go. I wonder if it is something to do with coming off my AD’s a month ago? I am now panicking about asymmetry and twitching in the arches of my feet. I take comfort from this thread and can see that I worried about this very thing - foot asymmetry and twitching - over two years ago I think. Also when I focus on my feet the other symptoms seem to stop or become less obvious- the yawning- and the twitching in other places. Also I don’t think I’ve lost any strength. But..... I’m very scared right now

Oh Jojo.... 4 years and you're still in the rabbit hole for no reason At this point, I don't know what anyone could say to help you This is truly a mental illness, not a physical one. I don't know what you're doing to treat your real illness in real life but truly, real life professional help for your real mental illness at this point is the only option I can think of to help you, especially in light of your post history

Positive thoughts

[jojo2316]

Oh Jojo.... 4 years and you're still in the rabbit hole for no reason At this point, I don't know what anyone could say to help you This is truly a mental illness, not a physical one. I don't know what you're doing to treat your real illness in real life but truly, real life professional help for your real mental illness at this point is the only option I can think of to help you

Positive thoughts

Thank you so so much for replying. Just writing a it down helps, but getting a reply, especially from you, helps even more. To be fair I haven’t spent the last four years entirely down the als rabbit hole- I’ve come up for air sometimes and even popped down other holes, like the brain tumour burrow and the panic cancer cave. I do know I’ve got a mental illness. That’s why I post here and not somewhere else. And actually, come to think of it, I’ve been almost 2 years out of the als hole, which is why it is so very lucky I have this thread. My memory is so poor these days if I didn’t I would think all my scary symptoms are entirely new and been in even more of a state than I am now. Thank goodness for NMP

[Scass]

Hope you’re ok my lovely. Sorry things are messy at the moment. Anything I can do to help? Xx


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[Murphy93]

Hey Jojo

I’m so sorry to hear you are going through this again. It’s is absolutely awful and I know just how bad you can lose yourself in the hole.

I’m 2.5 years now of MND fear and I must admit the last 6 months I’ve been doing great. I’ve had no twitching or any of my other crazy symptoms and rarely thought about it .

Recently had a bad about of anxiety and suddenly my twitching is back! It just shows you how crazy and powerful your mind can be .

I’m trying not to fall Over the edge back into the hole but it’s so hard.

I really hope you are okay and I’m always here to chat . Our mind can play terrible tricks on our body and I truly believe anxiety is the culprit for all your symptoms x

[jojo2316]

Hope you’re ok my lovely. Sorry things are messy at the moment. Anything I can do to help? Xx


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Oh Scass - thank you so much for replying and just you doing that, and being there, helps so so much. Hope all is ok with you?

[jojo2316]

Hey Jojo

I’m so sorry to hear you are going through this again. It’s is absolutely awful and I know just how bad you can lose yourself in the hole.

I’m 2.5 years now of MND fear and I must admit the last 6 months I’ve been doing great. I’ve had no twitching or any of my other crazy symptoms and rarely thought about it .

Recently had a bad about of anxiety and suddenly my twitching is back! It just shows you how crazy and powerful your mind can be .

I’m trying not to fall Over the edge back into the hole but it’s so hard.

I really hope you are okay and I’m always here to chat . Our mind can play terrible tricks on our body and I truly believe anxiety is the culprit for all your symptoms x

yes- stay away from the edge of that hole!! Sometimes, when I am well, I think I am more in control of it than I am.... but it’s so easy for a little trigger to send you toppling down if, Alice in wonderland style, quite out of control.
And it’s so interesting what you say about the twitching. Right now my twitches are crazy.... popping up all over the place.... just like they have been all the times before when I have worried about MND.... but when I am good either they aren’t there, or my brain doesn’t perceive them (can that really be possible??). I do agree the brain is incredibly powerful, particularly in the context of neurological disorders. I think I remember the neurologist I saw telling me that 1 in 4 patients she sees have “functional neurological disorders”. In other words they look like they have something very wrong neurologically but there is actually no physical cause. And cases like that are very closely tied to anxiety. It is interesting when you look at it like that. But when you are stuck in it, it’s just plain terrifying.
Feel free to chat to me any time.... and hope things improve for you before any kind of spiral happens xx