Als MND panic- please help me!

[Scass]

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?

I’m good thanks lovely. Plodding on...
Xx


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[pulisa]

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

How many times have you diagnosed yourself with MND, Jojo? You say the link between FNDs and anxiety is interesting but does that mean that you don't believe one word of it in relation to your own symptoms? xx

[jojo2316]

How many times have you diagnosed yourself with MND, Jojo? You say the link between FNDs and anxiety is interesting but does that mean that you don't believe one word of it in relation to your own symptoms? xx

Thank you so much for looking out this thread Pulisa. I know you don’t like ALS posts and I know you did it just for me. Yes. I know. You make a very good point. Like I said, there is a rational me; and a catastrophist me! And when I am in the storm of anxiety I am never quite sure which one is telling the truth. But- as usual, your words really help me. Xxxx

[pulisa]

Have you researched into the link between FNDs and anxiety disorders though? Just to make a change from the self-testing regime? Even if you don't believe a word of it.

Do you think going back on sertraline may help a bit with the "catastrophist you"? Just to help you get more of a hold on the physical manifestations of your distress? xx

[jojo2316]

Yes I am certain going back on sertraline would help- ssris seem to work for me (by “work” I mean they get me to a level where I can function...). But I knew coming off them would result in an increase in anxiety, at least in the short term, and I had warned myself to expect and accept it. So I will keep going for a little longer. If it doesn’t ease, and I continue to be unable to function in the way I want to....I will admit defeat. Or partial defeat and go onto a lower dose than I was on before.
And good idea about researching the link between FND and anxiety disorders. I imagine they are even more common amongst health anxiety sufferers, and in particular those who are anxious about neurological disorders. Research like this would probably be more healthy than the endless locked-in-bathroom strength testing!!

Have you researched into the link between FNDs and anxiety disorders though? Just to make a change from the self-testing regime? Even if you don't believe a word of it.

Do you think going back on sertraline may help a bit with the "catastrophist you"? Just to help you get more of a hold on the physical manifestations of your distress? xx

[pulisa]

What do you get out of the locked-in-bathroom rituals? What would you get out of looking into FNDs and anxiety disorders? Some neurologists specialise in FNDs so there are so many complexities to consider and you may enjoy getting your teeth into a topic which is challenging but illuminating? xx

[jojo2316]

I shall attempt to do this Pulisa. And also I am going to reconsider sertraline again. My doctor (who, yes, I’ve spoken to !!)has suggested it may be necessary....

What do you get out of the locked-in-bathroom rituals? What would you get out of looking into FNDs and anxiety disorders? Some neurologists specialise in FNDs so there are so many complexities to consider and you may enjoy getting your teeth into a topic which is challenging but illuminating? xx

[jojo2316]

Guess what Pulisa?! There is a whole BOOK about FND!!
https://en.m.wikipedia.org/wiki/It's...ur_Head_(book)

[jojo2316]

Well..... about psychosomatic illnesss- but the author is a neurologist so I think it’s a lot about FND. Paralysis, blindness, all sorts! What our clever (and destructive!!) brains can do!

[pulisa]

My ex neighbour's daughter developed an FND at 18 and she had to use a wheelchair as she lost the use of her legs. She's 20 now and much better but yes...the brain can play terrible tricks on you.

Are you going to order the tome?!! Would it help you make sense of this topic because it's a complex one which is taken very seriously by specialist neurologists?