I am so sorry Annmarie, I hadn't read this post, when I responed to another one on the same issue. I get the full picture now. Yes when I have been in crises, I have stopped breathing, do to complete weakness, my whole body goes, including lung muscles. I have had the tubes, & other times, if I can keep my eyes closed & not talk I can save the energy for my breathing.
Mary

Hi Annemarie - that must have scared you half to death!

Definetly get a bracelet and there is a "pamphlet on the MGFA.org site that I keep with me in case I land in a hospital that isn't versed in MG (same for first responders).

I have to say I had a similar experience when I did a small shot of Brandy to calm myself down so I could sleep one night several weeks back, although sometimes I can have a drink with no affect.

I think the difference was that I was so keyed up with tense musles using my muscle juice (as Annie calls it - I love that) then I did the shot and bam! Couldn't breathe.
I have a Bi-Pap machine for my apnea and that's the only thing that kept me from the ER that night!

There are different levels of crisis - the problem is that once you start to get to that point you never know if your lungs will completely shut down or not.

Be very careful! And I'd stay away from alcohol too. It's a depressant (physically too) so it will affect already weakend muscles.

Hi Annemarie!
 

I know EXACTLY what you mean, only MY crisis was b/c I took a sip of coke and by that time my nasal passages were so weak that I choked - literally could not breathe for about a min - after the 3rd one I was ready for the ICU - could not swallow @ all! I mean, not even ICE! Scary!

You do need one of those bracelets - they are very, very helpful - especially since there are meds that we simply cannot take.
Sounds like you need to have your meds upped for a while - either that or the liquid gold that I am always on......sux, but helps quite a bit for most of us.......wish it worked for ALL of us!

You need to take it ez and see your neuro SOON! JUst tell (s)he what is going on and they will give you the help you need!

Hang in there, hon!
:hug:Erin:hug:

Hi Annemarie,

Alcohol in any form and amount sends my MG into spirals. I took to havinging Lemon Lime and Bitters, cos you only need a little of the bitters, which are alcoholic. The next day my MG is always worse, so I hate to think what it would be like if I tried anything stronger.
So I've learnt to stay away from alcohol, and just smell the wine and appreciate the aroma, not that its the same as enjoying a glass occaisonally.........

Sorry you are having such a hard time. I don't have the bracelet but what I did was type up a paper explaining that I have MG {and what it is} and what meds I can't take and it explains to the EMTs what to do. This came in real handy last month when husband had to call 911 for me. {EMT thought I was having panic attack} Most EMTs never heard of MG and lots of Dr.s don't even know what to do about it. That paper has saved my butt a few times. I keep one by the phone, one in the car and one in my purse.

i keep a paper of er info including meds,drs,er family #s and a whole lot more in many places. i have one on refrig that i take when out walking,one around my drivers lic in wallet and hubby has one in his wallet. they get updated when needed-that way hubby has it if we're away,kids know it's on fridge. i have several other chronic illnesses before mg. looking at me you wouldn't think i take all these meds etc. hope someone benefits from this tip!!have a great w/e!!:)

I need to do that xmas, I do have an MG card in my wallet, & I carry my app. cards for doctors, but I wonder if they would look. It would be better to have it all on one piece of paper.
Thank you,
Mary

do you use ICE?
 

Choking and Humor
 

I choke on liquids quite frequently. When I had my Thymectomy they messed up my vocal cords so they don't close all the way which makes the choking worse. There have been times when I have taken a big swallow of something and I know it isn't going down. I wind up spitting it back all over myself. Then start the convulsions, eye watering, hacking up a lung and my personal favorite loss of bladder control while trying to get the liquid out of my airway. I try to see it with humor although there have been some very embarrassing episodes.

Leaningin, sorry but I had to laugh with you! Better to laugh than cry, right?

Interesting theory on the alcohol. Don't think I'll do any testing on the subject though! What meds are normal for mg? I'm on neurontin, flexeril, ultram, antidepresssants, and anti-anxiety. Seems maybe the flexeril and anti-anxiety aren't such a good idea if I already have muscle weakness. I have 3 different doctors who all think they know best. Think it's time I take charge and tell them what tests I want done. It's so easy to forget that they work for US!