"Acute MG" -OK all my "brainiacs" - I saw this on my chart - - whoops(!) it "fell" open......what does this mean?

I need some answers..........as soon as possible!

I am really, really scared.

I am usually really upbeat but the 15% mortality rate scares the bejeebies out of me! It would explain why my neuro is always available, huh? And the weekly blood work and shunt/port?

Is this the norm? Am I alone? Do we all have it or am I in trouble?

Love,
Erin

Erin, After your chart "accidentally" fell open, did you talk to your neuro about it? Acute MG is not good. If I was in that bad of shape, I wouldn't be making a trip to see anyone. I know that's not what you want to hear but what if you are in another city and need to be hospitalized for a while?

There are MGers out there who do have it bad. That's probably why they aren't posting here. They don't have the energy.

This is one of those times in life when you need to put on all the stops. You need to settle this disease down. Try not to concentrate on mortality rates and percentages. Concentrate on what you CAN do. Don't talk a lot. Don't go outside. Get groceries delivered. Don't stand!!

It's worth a trip to your internist to make sure something else isn't adding to the situation. I know they take blood a lot but do they regularly check for infections or thyroid problems? Have they ever done an erythrocyte sedimentation rate? That is sometimes high on those who are on immunosuppressants if they have an infection when the white count is ok.

You definitely don't want to become "chronically acute" and not have meds that work. MG needs rest. Lots of it. Just sitting takes a lot of muscle strength when you are not doing well. An aggressive disease needs aggressive action (or inaction) on your part.

If you haven't had that frank discussion with your neuro, now's the time.

I'm really sorry you aren't doing well. But please don't concentrate on the negative. Think about what you can do to make this better. Every single person here will understand if you take a little break. When I had my crisis, I was in bed for a month straight. That includes only trips to the bathroom. You do NOT want to get that bad.

Hang in there. And try not to let a "label" freak you out. You should take this seriously but so seriously that your immune system won't like it! It needs to laugh.

Annie

"15% mortality rate" = 85% survival rate.. Erin we all have to look at the BRIGHT side. When I went in for my Thymectomy my Dr. told me I would most likely not live through it so I went and saw all my family members did legal work and so on but inside I thought, if it is my time then I will go, if not then I will live. And live I did! Please, I beg of you to not dwell on that 15% but to embrace the 85%!

Please don't panic. Lets think about this logically.

The Drs couldn't write mild MG or shes a bit poorly!, as you aren't treated with mestinon alone, you are treated with IV IG and to be treat it with that you have to be pretty poorly, which you know you are. A lot of people with MG are treated with steroids and mestinon and not IV IG.

Like Joanmarie said its 15% mortality, that means 85% dont die of MG. Lets just all be glad that we weren't born 100 years ago when the mortality rate was an awful lot higher over 33% in the first year.

Your strong and tough I think you are just having a bit of a wobble because of the fact your in your favourite place (bit of sarcasm!) the hospital.

Im always having a sneaky peak at my notes when Im in hospital, just for something to do! I would like to take a big red marker pen in and make corrections!

Please dont let this panic you. I really hope you are feeling better soon.

Love
Rach x

Hey Erin,

Remember that stats are things doctors use to justify to their orders to insurance companies. However...

I do think that Annie is right. Time to have a talk with your neuro about your questions and to seek advice about your trip to New York. You really do not want to be that far away from your neuro if you are at risk for a crisis.

Thoughts and prayers are with you.
Sue

I just want to say as a statistician that that 15% includes everyone (if I understand correctly) who dies of mg. And a lot of those deaths are probably people who had no idea they had mg until they went into a crisis and died. I can imagine that if you were in the middle of Nebraska or on a cruise ship in the middle of the sea or even in a city hospital where it took a few days for someone to come up with the idea of testing for mg that your chances would be much weaker. It's difficult at best to be treated for mg. To start from scratch in a crisis - that seems like a situation where someone could easly die. But Erin, you have the diagnosis, you know all the signs, you know when you're slipping and you have a great husband who knows to get the right kind of help and a great doctor who can and is willing to get you good treatment. I think that's going to change the statistics for you. You're not a random event. You have a lot of other factors going for you.

That being said, I agree with Annie. Talk to your neurologist, throw yourself into getting better. Take it easy, don't work (I know that is so, so hard!). Do whatever is necessary. The world needs Erin! Take very good care of yourself.

Bluesky

Being from Nebraska, I know what you mean.

Hey Erin,

I understand your worry...But I agree with what everyone's saying here...The 15% accounts for anyone with MG, not necessarilly specific to what catagory they've been placed in based on their symptoms...I think that anyone getting IViG or PLEX would be considered 'acute' on paper, but it doesn't mean that they're always acute, just that their MG might be in an acute stage...I think that it also helps to justify the treatments, maybe due to expense? Those treatments are used for people with moderate to severe MG, but they could also be used for people who aren't responding to other treatments, whose symptoms might not necessarilly mean that they're going to go into crisis, but are just persistent...

Don't worry too much, where it gets you down, like what Annie's saying...But do try to get a complete physical...You've prolly already done that...But don't give up...Something else might be going on that's making the MG worse...I know that for me, my MG's pretty bad right now too...I know that I have some other conditions making it harder to get completely well...It really helps to get everything figured out...

In the mean time, rest assured that you're not alone in this, and that you WILL get better....You just gotta unturn all the stones!

Nicky

THank you guys! I needed that! I was just feeling low and freaking out.

Annie - what is that e blood test you were talking about?

I will be in next week getting my juice and come out feeling like a CHAMP!

I haven't let this stupid disease worry me that much and I (hopefully) won't again!

As for the trip to NY - I will obviously have to make sure Dr. I is OK with it, but whatever he says goes!

I will also pray for remission nightly. There is always HOPE - for all of us!

I should be getting my port/shunt very soon -----soooo ready!

There is NO WAY I could stay away from this site - you guys mean too much to me! I love hearing how everyone is doing........

As for the "acute"part- i've been told by every single nurse @ the Methodist that I am waaaaay better off than every other MG patient there, so I am very thankful!

Again,thanks for the encouragement! I needed it!

Love,
Erin

Erin, What "e" test are you talking about?