Is it a sign?

[matthew55]

My knees have started to vibrate and it doesn't matter if I'm sitting or standing. Is this early warning that my legs are on the way out? 🧐😕🤗😚Xx

[Guest]

Only time I've seen someone do that is because of a spasm, which anybody can have ,I get them don't have mnd

[Ellie]

My knees have started to vibrate and it doesn't matter if I'm sitting or standing. Is this early warning that my legs are on the way out?

Or perhaps you're thinking of me 🤭😍😍😘

[Ellie]

But yes Sweetie, it could be a sign 😥

Does it happen at random times or after/before you initiate a movement, even the slightest thought of moving a leg?

Hugs, hugs and more hugs 😘😘💖

[matthew55]

Not always

[Guest]

I didn't say!always! 'the only time I've seen someone'

[Ellie]

My knees have started to vibrate and it doesn't matter if I'm sitting or standing.

Yeah mate, you're right - muscles in spasm with ALS don't really vibrate. To me, it sounds like you're describing a tremor. xx

[Ellie]

matthew55 Just a thought mate - if your leg muscles are unfortunately weakening, you may need to reduce the amount of baclofen you take daily. Its job is to reduce muscle tone and, if your muscle tone is reduced, you won't do yourself any favours in not reassessing how much baclofen is in your system at any one time.

I'm not saying that you should reduce it, just to be aware that baclofen lowers tone in every muscle, not only the ones we want it to. 🤗 😘😘

[matthew55]

Between the devil and the deep blue sea are we. Damed if do and damed if we don't. Isn't MND such fun! 😁🤣😘😍xx

[Ellie]

...Damed if do and damed if we don't.

That's it in a nutshell... 😩😩 😘

[Heather R]

That’s something I am struggling with, how much to take medication which all have some sort of side effects. I started taking hyoscine patches and my eyesight did go blurry, which I didn’t realise was a side effect until I read you wrote this somewhere Ellie. They have now given me drops, and I am hesitating taking them… how much of an issue is my saliva really? I have also got carbocystine sitting here ready to be taken, and I haven’t taken the plunge yet. Probably will drive the GPS mad with my procrastination x

[matthew55]

I take 100ml of Carbocisteine in a day with no side effects.

[Ellie]

That’s something I am struggling with, how much to take medication which all have some sort of side effects

You're definitely not alone on this, Heather - it's the ultimate Goldilocks task, not too much, not too little, but just right 🙂 And finding that sweet spot can take a few weeks.

If, for example, you find your secretions are thick, sticky and causing you real issues, that's where the carbocisteine can improve your day-to-day life. And yes, it is a case of weighing up the pros and cons of each medicine with one's personal attitudes to taking medication.

I would suggest that, for all meds, you follow the prescriber's or manufacturer's recommended dose to start with and, if one's symptoms change the dose can change.

Love Ellie.