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-   -   How delayed is your weakness? (https://www.neurotalk.org/myasthenia-gravis/183414-delayed-weakness.html)

Anacrusis 02-03-2013 11:43 AM

How delayed is your weakness?
 
If you experience delay?

I noticed that apart from during my worst period, there was often a delay in muscle weakness……

Something like this:

1) Altitude – not long after
2) Antibiotics – one day late
3) Sedatives – one day late with limb muscle weakness following breathing weakness
4) Worst period – immediate weakness
5) Middle period – rapid weakness with repetitive muscle exertion
6) Better period – myasthenic weakness a few days after muscle exertion

(I can pretty much say that there was no delay during the worst peak since the body was already fatigued during the preparation phase of an action and could neither start nor sustain certain actions where specific muscles were not able to hold up their own mass and the weight of the bones was more than enough without adding extra challenges)


Anacrusis

AnnieB3 02-03-2013 11:35 PM

Anacrusis, Why are you taking a sedative? Everyone gets weaker on one.

I've never gotten weaker after an antibiotic. Which ones make you weaker?

Altitude does not make me weaker, it only makes me more unable to breathe well.

As far as "periods of weakness," MG is highly unpredictable and I just go with the flow instead of trying to figure it out ahead of time. ;)

That's my 2 cents.

Annie

cait24 02-03-2013 11:55 PM

My symptoms are usually delayed 1-2 days after the activity. If I really push myself (ex: housework) what I find is that I can hardly move my legs on trying to get up from a seated position even after several hours rest. In the last few months, I have had to sleep in the recliner on the first floor a lot because I just did not have the strength to make it up the stairs until morning.


kathie

Quandry 02-04-2013 12:54 AM

Better period - I haven't had a better period for about ten months, but when I did, the weakness would get worse within a week of too much physical activity sometimes dragging me down towards the Middle period.

Middle period - Weakness is delayed until later in the afternoon or the next day.

Worst period - No delay, have to lay down right away.

I spend most of my time in the middle to the worst, but I'm learning how to manage my activities and I'm trying my best to at least stay in the middle.

anon6618 02-04-2013 10:09 AM

Interesting...
I have lots of "delay" indeed. I do not recognise this immediate weakness you should get with mg. With me it's like this:

I do something. I feel my body saying: stop, it hurts, it's difficult, i'm getting weak. So literally every step I take costs me more energy. But I do not stop, I fight, and think: stop being such a *****. It's like fighting quicksand, but I'm still being stupid and think I can fight it. I keep going, going until one of the two things occur:

1) I've done it again, did too much, my body is broken and I am too weak to do anything (mostly it's me being in bed or hospital or something).
2) Mentally I could stop the thing I was doing, probably because I considered it done, so I rest. Now I ge a big blow of overwhelming fatigue, tiredness, weakness and feeling awful. I lay down, and have to stay there for a long time.
And days following I have more weakness.

So an example: I want to do my hair. I do it, but I feel my arms. They start to hurt, they "want to go down" and just hang there. I do not want this, I'll get angry at my arms and start fighting it. I keep going, although it starts to feel like I'm weight lifting. It's over 1 min now, I'll start sweating, ooh they get so heavy, it's like gravity is working overtime. It's like a battle between mind and body.
After almost 2 minutes I did get a ponytail, and it doesn't look like I'm retarted anymore. I did it myself! My arms can go down now.
But I'll pay for this, I can't use my arms for a while ánd overall weakness gets to me.

Hope you understand this: for me it's not like in those discriptions or MG movies. It doesn't get real paralized, or how could I fight it for a while? The real "blow" starts when I say: go and rest muscles. They do rest, but so much I can't use them. So paralizing weakness in rest... Weird eh?

Also in my worst times I do not get this "action-direct weakness-rest-better" stuff like I should. It's waking up weak, and I do not get stronger with rest, in those days it's more a surviving thing.
Weird!

Anacrusis 02-04-2013 11:17 AM

Annie - I am not taking a sedative any more than I am taking an antibiotic or going up in a hot air balloon for that matter!!! ;)
I´m talking about my previous experiences.

The worst muscular weakness I ever had was whilst taking antibiotics – and strangely enough the experiences are quite similar experiences to what I encountered with previously having been on sedatives.

With sedatives everyone gets weakness but I did not know other people also got delayed reactions of weakness a day after the hypnotic effects have already ceased to be effective and medicine has supposedly been excreted.

´Snowflake disease´
= ´Snowflake response´……I don´t try figuring out ahead of time either. What counts for me is the processing. I am benefiting hugely from writing about my experiences and listening to others´ - it does not matter how unpredictable those experiences have been in the past or even how unpredictable they might end up being in the future.

Kathie – Bless! I do hope that your new medication regime will start to kick in soon and help get you up the stairs and into your bed at night...

Ravenclaw – I´m so sorry things are such a battle and that rest brings additional challenges. I want to thank you for sharing such a unique and informative description....

Quandry - Its almost as though when you are better you still pay – the bill just comes later on!......

A few years ago I had a horrible experience with post exertional malaise just from a few occasions of very gentle swimming.
It started a few days after the exertion and ended up lasting one whole month :(

Anyway, Quandry,……Do you happen to know why there are such delays?

Quandry 02-04-2013 01:31 PM

Quote:

Anyway, Quandry,……Do you happen to know why there are such delays?
I wish I knew. I think it's kind of like a rock rolling downhill. At first it rolls slowly out of place and starts gaining momentum (better period) until the rock moves along a steeper course at a quicker speed (Middle period) and then the rock just falls off the edge of a cliff and there is no delay at all (Worst period).

Anacrusis 02-05-2013 01:54 AM

Quote:

Originally Posted by Quandry (Post 954081)
I wish I knew. I think it's kind of like a rock rolling downhill. At first it rolls slowly out of place and starts gaining momentum (better period) until the rock moves along a steeper course at a quicker speed (Middle period) and then the rock just falls off the edge of a cliff and there is no delay at all (Worst period).

That is quite the analogy!!!

I was also wondering when you do the´over´exertion one day
Have a few days with calm in between (just before the storm)
And you then get a delayed exacerbation.......

So what is happening to the muscles just before the storm?!

And no....I won´t go try and google that one!!!!!

Have a great & minimally myasthenic day :Viking:

Anacrusis :)


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