Hyperexcitability phase

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Re: Hyperexcitability phase

Postby joycecaroll on March 23rd, 2015, 6:04 am

Thank you Yulia. Your post really helped. I'm just trying to take this one day at a time now. I've started my new job in neurology and I absolutley love it, but at the same time it's making it harder for me to maintain some kind of distance from my worries. I spend everyday with what scares me the most.

I'm starting therapy next week as I know it's the only thing that will help me at this point.
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Re: Hyperexcitability phase

Postby Yuliasir on March 23rd, 2015, 6:46 am

Sometimes it is called contraphobic approach - to come bravely and face what scares you most.
but spending 8 -12 hours in the circumstances where everything reminds the fears... However this still might be helpful. I remember that when I was in the middle of my fears, I once had seen two ladies, both neurologically damaged, in my own small town - and it helped me to understand how far am I from them with my twitching and cramps... they were really DAMAGED, severely - curled back, twisted legs, distorted hands...

and one of them was wearing well fashioned top, had a nice haircut, big earrings - and it was another lesson for me - even if you are crooced like an old tree - there is no reason to neglect life and its pleasures.

So I hope you can turn even your working circumstances for a help for you.
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Re: Hyperexcitability phase

Postby joycecaroll on March 23rd, 2015, 7:22 am

You're right Yulia. And I think I can turn this in to something positive.

Can I tell yu about my worries at the moment? I talked to Docen and he explained that only a minority of patients in the studies had initial clean emg's. That really helped. My only remaining worry right now is UMN signs. Could I develope UMN signs in these next comming months? Or would they allready be present?
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Re: Hyperexcitability phase

Postby Yuliasir on March 23rd, 2015, 8:13 am

I am not a neurologist, but really I can tell that if you do not have LMN signs, do not bother yourself with upper signs. As far as I remember, they are leveloping usually (in most cases) later in the cource of disease. Seldom people start with UMN signs (which are, as far as I can remember, hyperreflexia (asymmetric one) and spastic paralysis (very painful and could not be missed anyway)). Usually ALS is manifested with LMN signs which are silent, painless weak paralysis (paresis).
And see how your brain is fighting for OCD-related stimulation. Ok, you blocked me with EMG and clinical - eeeeh, then we will go from this way - figures, ok - blocked on figures side - we will go on this side, would think about UMN vs. LMN signs, etc. etc.

Usually those who make first step to recovery once start with complene (as much as possible) deny even to think in this way.
Just make a kind of agreemnt with the mind - nope I do not accept your temptations to clarify everything :)

it is hard, I know. We all are in fact control freaks and the idea that we can not control our body and can not control all circumstances, signs and proc/contras drives us crazy.
but this is our way to healing - accept a bit if uncertainty, call if flexibility, if you wish, and start to get out of rigid walls of fear.

Fear is not the same as control. We loose much more control trying to regulate everything and promising that this one answer would be the last one.
So your true control would be when you would be able to say No to your constant questions and let yourself not to know the answer. Here were the golden key to freedom lies :)

believe me I did this trick several times and I hope I will do it again and again of necessary.
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Re: Hyperexcitability phase

Postby joycecaroll on March 23rd, 2015, 10:15 am

It's really absurd how OCD work's. It's exactly the way you describe it Yulia. In Sweden we call it the disease of doubting. Everytime I think I just need one more answer to be reassured, I find my self in doubts again.

Thank you for the info on UMN signs. I'm having a weird feeling in my thumb, and also a weird feeling when I swallow. But UMN signs are associated with pain?
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Re: Hyperexcitability phase

Postby Yuliasir on March 23rd, 2015, 10:41 am

dear Joyce, I really would not answer your question :) I consciously would not like to play on the side of your fears :)))
I encourage you to use that as a chance to try this strategy which I had described before.
Say no to your mind. No more temptations. It is your brain wanting desperately for dophamine (fear-question-answer-dophamine!) - but the dose is far too low already, so it increases amount of fear and doubts and questions...
You can not stop being obsessed in a moment. but try to let yourself not to be obsessed with that -finger, throat, whatever.
For a few minutes at least.

One of hooks on which the fear keeps us is - a wishper: you can not live with this fear...
believ me you can.
I did it. I can live now even with the fear of loosing many things I was used to due to the civil war. One of my friends just has cancer right now (I pray for his chances and have to live with that too - and I do, more or less) Everybody here did it, sooner or later, or will do, same will be with you. you cn leve with fear and ubncertainity. You will live with that.
as soon as you can feel you CAN LIVE having fear and concerns just popping up on the background - you would become a master, not yur fears and concerns. take a chance :) Just notice them it but do not try to find and answer.
you would never be as much safe here as you were in your mom's belly. But still affordably safe for many many years yet.
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Re: Hyperexcitability phase

Postby joycecaroll on March 26th, 2015, 4:40 pm

Yulia, thank you so much for your post. I keep it close and read it over and over again when the anxiety hits me. I know you're right.

You and Docen have truly helped me a lot these last few months. Thank you. It means the world to me to know that yu guys are here for me.
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Re: Hyperexcitability phase

Postby joycecaroll on April 7th, 2015, 9:19 am

So I've started to swallow the wrong way now. I aspirate liquid. Just sometimes, like a few times a day. Anything to worry about? I'm thinking it would be more often if it wasw ALS?
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Re: Hyperexcitability phase

Postby TwitchyDoc on April 7th, 2015, 1:15 pm

And how do you know it is truly aspiration (or penetration)? I mean, are you getting coughing/choking spells when drinking? Does your voice get wet after meals or drinking?
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Re: Hyperexcitability phase

Postby joycecaroll on April 7th, 2015, 4:27 pm

I cough after drinking.

Also, I'm worried one finger on my left hand is showing signs of spasticity. It's a bit more crocked than the one on my other hand. I'm so sick of this. Could I have UMN signs in my hand with almost no bulbar signs? Could it spread that fast?
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Re: Hyperexcitability phase

Postby misterjuanperalta on April 7th, 2015, 5:28 pm

Post a picture of fingers.
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Re: Hyperexcitability phase

Postby joycecaroll on April 7th, 2015, 10:25 pm

My pinkie is slightly turned in towards the other fingers. It's a slight difference from the other hand.
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Re: Hyperexcitability phase

Postby TwitchyDoc on April 8th, 2015, 12:33 am

If there is really coughing after drinking, get it checked asap - there are various causes for aspiration but the ultimate consequence is the aspiration pneumonia/bronchiolitis.
Do you have any signs of reflux disease?
As for the fingers, you say it is turned in towards the other fingers, so I assume it is leaning on the side - do not worry about that if there are no functional issues.
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Re: Hyperexcitability phase

Postby Yuliasir on April 8th, 2015, 1:00 am

Joyce,
most often reason for people coughing after meals/drinking is an acid reflux. If you have a persistent mucous cough after ingestion, it is that one. Aspiration feels, well,,, a bit different, you know. I am not you and could not tell what your cough is but please remember that reflux is still no. 1 in the list.

as for slightly bent pinky finger, I am really sorry to say that, but this is ridiculous to take that for a sign of spasticity.
Spasticity is a result of increased muscle tone due to disruption of neural pathways in the brain or severing of them between the brain and spine, and usually it is not 'slight'. I had a colleague with the very mild form of something like child paralysis or so - and he had residual spasticity, a very bit of it in his hands.
His fingers, genreally working etc. (he was an electrician basically) were still in a very specific position, not like just slightly bent pinky finger. His wrists were still tending to be bent inward. That is what ever a residual spasticity, a very mild, looks like.

Please do remember you are prone to exagerrate symptomes due to the nature of our disorder. We all do that.
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Re: Hyperexcitability phase

Postby joycecaroll on April 8th, 2015, 1:32 am

I only cough sometimes. I can drink a lot without coughing.

Thank you guys. Seriously, I don't know what Iwoukd do without you <3
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Re: Hyperexcitability phase

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