So I woke up, was able to do everything, felt great, then called
my neuro, asking what his thoughts were on me excersizing. He responded w just try it, if you get weak stop. So during school I hav this 8th period class which is soccer, indoor. I played the GOALIE, pretty much just walking Round, doing not alot, best position to start out , so I thought. So here I am, laying in bed w breathing issues, though not big enough to go to the er, my limbs are weak, especially my arm an a little swallowing problem. But not bad. My energy is none, I've got a geology test to study for, and I can hardly keep my eyes open.

I'm assuming as of now skiing, is a no.



Any words of advice?

Also, do you guys get light headed and sort of tingly or "out of it" and weak when your in trouble? I am right now, but I'm going to try to rest it off.

I do feel that way when I'm not feeling well...You have an infection in your sinuses, right? Having an infection can make me feel that way...

Last time, you mentioned how you still have that infection and the plasma exchange didn't work...Just wanted to let you know that this is pretty common...If you catch anything, or have an ongoing infection, those antibodies will get made up quickly, and the infection will sorta cancel out the effects of the PLEX faster than you think...It's happened to me countless times...It doesn't happen as much now that I'm on prednisone, but it used to happen all the time before I was on steroids...I've also read about others having the same experience...One girl was in the hospital, had PLEX, and caught a lung virus. This cancelled out all the PLEX she had...

I think it's best to get rid of the infection you have, rest, and then you can resume your activities...I'm not sure when your ski trip is, but hopefully, by then, you'll be feeling better...Are you weaning off of prednisone, or still at the same dose? All these medications, grouped with the complexities/individuality of the MG plus infections can make things unpredictable...But infection is definately something that will turn on the antibodies.

Sorry you're going through this, Tyson...If you're really not feeling well, call your doctor...The spacy-tingly-out-of-it-thing doesn't sound so good...I get that way if I'm anemic and stand up quickly, or really sick, or am bending down for too long, but I don't have it when I'm resting...


Nicky

Tyson, Spacey and tingly can mean anything, like bad circulation. Ditto on what Nicky said - get it checked out. They can do the erythrocyte sedimentation rate to see if you might have an infection, along with a CBC (complete blood count).

I think when a person who is so young gets a disease, denial may be even harder to deal with than the disease itself. I don't know if that's what is going on with you but it sure seems like it.

I'd like to "virtually" slap your neuro upside his head. I don't believe in violence of any kind but I am angry. I think he said to go ahead because he is frustrated too. Like when kids incessantly ask their parents, "Can I, huh, can I?" Stupid reasoning to tell you to play Russian Roulette though.

Ask yourself some "what if" questions. Do I want to be on the icy slopes, have an MG crisis and have to be airlifted to a hospital that may or may not know what the heck to do for an MG patient during one? Do I want to expose my disease to cold, and then hot from skiing, only to make it worse? Do I want to lose oxygen on a plane trip (it goes down to less than 80%) and then maybe not be able to fly back home (if you are flying to ski). Do I want to spend an entire trip not being able to have fun because I'm so worn out, unable to breathe or move? Or the worst question . . . Do I want to die?

For whatever reason, your MG seems to be very bad. Could be your age, could be too much of one med, could be something they don't know yet. The "why" doesn't really matter in the big picture because the reality is that you can't do anything beyond survival right now!

I know this sucks. It's not the life any of us want. But it is the one we have. Fighting against it or denying it will only hurt YOU. And those who care for you. I hate that I have this disease but I "negotiate" with it instead of fighting it. I give up a lot to do the few things I really like. Can you think of it in terms of having higher quality things to do, even if they don't involve sports? If you can't, I'm afraid of where you will end up. Seriously, you are on the edge of possibly not breathing at all.

Every life is special, no matter if you are sick or not. No one knows what role any of us - even some not so nice people - have in this world. You need to stick around for several decades to find out what you can do with your life. And to see if there are better drugs or cures out there for MG. But to do that, you need to sit your butt down and chill. It's okay not to play soccer or to ski or go to parties. Those are NOT the things I wish I had done before I got sick now that I'm sick (though I've had MG since birth). The things I wish for involve people, not doing or having things. If you were going to die today, what would you regret? It helps to think that way sometimes. I never say, "Damn, I wish I would've cleaned more."

I don't know what else to say. You have to STOP kidding yourself. Or this disease is going to stop you. We all care about you and want you to have your best life.

Hugs,
Annie

Sorry for the short post. I'm on my cellphone. Yet I'm debating whether it's an er trip or not...sometimes I'm concntrating on my breathing, sometimes I'm okay to not concentrate, and coming up the stairs, I had to have the rails help in using what strength I had, up the stairs. Swollowing is just a problem with the lower esphogus muscles.

Any ideas? Please don't b mad at me for posting):

OH, geez, Tyson, I would NEVER be mad about the fact that you are an honest, caring, intelligent man who has been crapped on by MG!!! I can't imagine anyone being upset with you.

I'm just worried, really worried. When in doubt, go in. Because when most of us do go in, it's already too late. People are so good at putting things off, at denying what is going on. Me included.

I hope you will be okay. And I hope you aren't texting and driving!!!

Annie

Don't worry...No one's ever going to be mad at you for posting, sweety...We just want you to feel better...It's good that you're calling your doctor...You can always come to this site and ask whatever you like...The site's here for support...But when your breathing is bad, make sure that you let your doctor know...

The 'out-of-it', tingly feelings, seeing stars (silvery, floaty trails), light-headed feelings are signs that you're not getting enough oxygen....This is why I'd get it all the time when I was anemic, and also after heavy exercise...If you're having this during rest, make sure to let your doctor and family know.


Nicky

Oh Tyson bless your heart I just want to reach through this computer and hug you! Ditto on what Annie and Nicky said....no one would ever be mad at you for posting with questions or concerns. I also agree the light headedness and spaciness is probably from lack of oxygen. Have you had a CBC recently? I am wondering if your anemic? I would call the Dr and run things by him just to be safe. Try and get some rest and don't stress over your ski trip. Once you get this disease under control you'll be able to do more of the things you love.
Kendra

Tyson, No one could ever be mad at you! You have been going through a really rough time, but it will get better in time. I hope you call your doctor and let him/her know what you told us. In the meantime get all the rest you can. Take care sweety and let us know how you're doing.

Big Hugs,
Pat

Annie- I just didnt want you to be mad about me not going in sooner, but i rested up, and feel much better now..I just needed sleep. I wasnt texting and driving
Yet I guess if I were to excersize again, it could be more detremental, so i wont.

Nicky- thnks. I love that i can come here and vent, no one really understands but u guys.
I will get the dizzy thing checked out, but its when im really tired, and weak that i happens/close to an crisis/exasasturbation.(sp) but, would you guys reccomend going to school tomorrow? I think i should take it easy, yet i do have a big test i should be studying for..


Kendra- more than likely i have had a CBC count done recently, but i just had blood drew yesterday, for the cellcept. Would that show it? Because my neuro said they were fine.

Im not doing another single activity that will mess me up until i go, so hopefully that will be in my favor.

Pat- Thanks! I know, i have been going thru a rough time, but hopefully it will get straightened out soon enough.. Dr. Howard (any of you heard of him) MG specialist at UNC, great guy, who did my single fiber EMG, wants me to see him soon. So i schued. it on March 1st. So I have two specialist appointments coming up, one with him, and one at unc, hopefully it will give me some answers.

Hope this message finds you well.

Tyson, Yes, I know Dr. Howard (saw him twice). He is very good. Write down a BUNCH of questions for him. I'm glad you are going back in. I'm confused though - Dr. Howard is at UNC. Why are you seeing two docs there? Regular neuro and Dr. H?

Good, glad you rested up.