I guess I should have known this was going to
happen if I excersized too much. I thought my specialist was correct in saying I was better. I guess not.

I'm sitting in the er, not hooked up to bipap but close. My
breathing however has gotten better since I came in, yet I'm so
weak. I get dizzy when I walk, and my
throat/ chewing muscles are very weak. I get winded when I talk.

How many more times will this happen? Damn.


Hope your all feeling well.

Tyson, Well, the problem with saying that "you're better" with MG is that the reality is you can always get worse. It gives a patient a false sense of security.

I'm sorry you're in the ER. Not a fun place to be but the best for you right now. I'm glad you went in. Hey, at least you're getting really good at listening to your instincts!

Maybe they can hook you up to an ECG to see what happens to your heart when you're bad off. I was thinking that a holter monitor or even monitor might be what a cardiologist would order. That's what mine did in addition to an echocardiogram.

I hope they can figure out if you have too much of this or not enough of that or whatever. I suspect it was the exercising though that pushed you too far. I simply socialized two weeks ago for a couple hours and my tongue/neck/jaw has been bad ever since. It's hard to predict sometimes what muscles will get bad, for how long or how quickly. This disease sucks.

Hang in there. I hope you keep getting better.

Annie

I am getting better at realizing my signs. But I feel much better. My specialist just came by to see me and he thinks my mg is still
good and it is something else with my heart that is doing this. So today I'm
meeting alot more doctors.

I'm still
having trouble being able to talk alot. While talking to dr. Juel I had to stop and take breathes and still just weak. We might b doing plex.

Thanks.

Hey Tyson,

Sorry to hear you're back in the hospital, but I think it really is the best place for you right now. It's good you are going to be seeing more doctors. Hang in there kiddo and keep us posted. I will be keeping good thoughts.

Big Hugs,
Pat

Hi Tyson!

Sorry to hear you had to go to ER - but so glad that you knew it was necessary to go there.

Seems like you have your doc's attention. And I think it's good that they are going to widen the diagnostics beyond MG.

Pls let us know how it works out. good luck.

Sue

Hey. Thanks for all your messages.

Annie- they did hook me up to a 48 hour ECG. And I hve to record whn I feel weird.

I'm
still able to eat. But texting this right now is hurting my arms. And my last blood pressure was 146/50...usually the second isNt so low. I feel lightheaded. But my pulse was 86.

Thanks all.

Tyson,

Sorry you had to go to the hospital again!

This might seem far-off/naive, but have you been watching your salt intake? I ask because when I'd make the mistake of eating something salty (because it was scrumptious), I'd get dizzy and feel this intense pressure in my head...I don't have a BP monitor, but in retrospect, I think that my BP was probably really high...I know that because when I'd go for plex, sometimes my BP would be as high as yours when I'd have one of these episodes while there, and prior, I had eaten something salty...I'd end up with pounding headaches for the rest of the day...

Also, when I was in the hospital and had just started prednisone, the food they gave me was salty and sweet...I think that they forgot that I was supposed to be on a low-salt/sugar diet...I didn't really know this at the time either, so had no complaints....

Nicky

Good points, Nicky. They don't always watch those things in a hospital, unless you tell them what you need.

I'm very relieved to hear they are monitoring your heart. I hope they will do an echo while you are in there. An echo can be hard to do with MG because it involves a lot of small periods of time holding your breath. It's doable though. Make sure you tell them about your headaches (what side of head, how it felt, etc.). They need as many clues as you can give them in order to figure all this out.

I think a stress test would be too hard for you right now, unless they do the chemical one where you don't exercise.

Take it easy, catch up on rest if you can.

Annie

Nicky- I haven't ever been told by anyone but u to worry about my food
intake. I think they think because I'm so young that this isn't going to be a
problem. While my intake isn't awesomely healthy it isn't horrible. So I feel like
it's an actual medical problem. Thank u tho. It's nice to see
u thinking of possible things. Hope u feel good.

Annie- yeah i'm also very happy they are monitoring it. It feels good. But the other day when I had the EKG, my neuro said he did see an arythmia. Yet not in the one last night.

So I hope it showes on this ecg, for
it's 48 hour limit. I tried to go for a walk earler, but got
head pains (sharp) after a few times
around the ward.



Hope ur doing well.