Hi Everyone,

This may seem a little left field, but I was having a discussion with one of my now many MG friends who I have made through forums like these. We were discussing my ptosis, my friend has a wealth of medical knowledge. I happened to mention that I had cleaned my bathroom and my eye had shut.

She quite rightly pointed out that this according to modern ( I use this term losely) neurology shouldn't happen with MG. Accepted medical theory is the muscle only should fatigue on usage. So ptosis should only occur if I was reading, driving or watching the TV. She pointed out though that Mary Walker the lady that did the stuff with neostigmine in the 1930's I believe, did find that even if you didn't use the muscle all muscles could become fatigued- particularly with respect to ptosis.

Does anyone else out there find different muscles fatigue to the ones that have been used. Eg walking making you have ptosis?

Its just out of interest. I have never been asked what causes my ptosis by my neurologist.......but then its all in my head isn't it (just point out I was being sarcastic there!)

Look forward to your replies!
Love
Rach

Hi Rach! Yes, I have noticed that the use of any of my muscles, I have ptosis.......Don't know why!

Hope this helps!
Love,
Erin

Rach, your doctors have to be taking crazy pills.

Have any of you been walking, using only your legs and breathing muscles, and had your arms get weak? The first time that happened I thought it was weird, until I took time to think about it (which your doctors should be doing).

When you use a specific muscle group, like the eyelid, it does get weaker. You "use up" what amount of acetylcholine you have in that area of your body by using it. That's part A of MG.

Part B of MG is that antibodies are attacking your entire body and result in a lessening of acetylcholine everywhere. So while you might "only" be cleaning a bathroom, you are using up your system-wide amount of acetylcholine by doing an activity. ALL of the muscles will be affected, especially your eyelids. Eyelids, for what reason escapes my mind right now but has something to do with the relatively smaller nerves/veins, are especially sensitive to a loss of acetylcholine. That's why they are often the first area of the body to get weak in MG.

The body does not have segmented acetylcholine. As if you can contain it in each separate part of the body. For example, the acetylcholine that your leg uses is the same acetylcholine that your eyelids use. Does that make sense?

So, this "boffin" says that your docs don't know what the heck they are talking about. But you already knew that, didn't you fellow boffin?!

Annie

Firstly its quite obvious that if you use up the "A" chemical ( which I can't spell but is in annies post) you use it up from your entire body. Its logical but then we don't appear to be applying logic in modern medicine anymore!!

Thanks Erin, for replying to my post, your such a sweet heart.

To Annie, my fellow Boffin, you crack me up! Your so clever.

Thanks again for making me smile both of you!

Love
Rach

Ok, I'm new here and tried doing a search but came up blank.

What is a boffin?

Here you go, Kathy. Rach is from England, which explains a lot.

http://en.wikipedia.org/wiki/Boffin

Although I take exception to the social ineptitude aspect of being a boffin!

Since my surgery, I've been having a major flare of MG....I wake up in the morning with garbly, mushy, thick speech (similar to the Godfather--but worse...I should be an impersonator lol)...My speech is like this as soon as I start talking. It does get worse the longer I talk, but the idea that the weakness/semi-paralysis can only occur after repeated use seems incorrect to me....Whenever my MG's bad, it's bad from the get-go...Also, my tongue is constantly fat and pale looking when I'm weak...When I have a plasma exchange, or mestinon decides to work, my tongue goes back to being very red and 'thin.' Weird!

Boffin was my nick name was in University!

Love
Rach

Lol.. All you Boffins.. Am so glad you are all here with us!!

Kathy: Rach and Annie are very good boffins. Lol...