Hey all. So is it normal to
feel better from an exasturbation in the morning? I feel quite alright right now, but they are transferring me to unc, but I don't know what for...since I feel
better and the only problem is swallowing. And at that it isn't very bad. I'm
just tired. I don't really know what is going to happen at unc that hasn't here, but my blood pressure went down to 124/61.

My pulsox
is 99. And my heart rate spikes when I sit up from laying down, or stand up.

Thanks again..

Hi there!

Glad you are feeling better!....but, as you know, your condition has not been stable over the last few days. So, yes, it is not surprising that you feel good right now. And also would not be surprising if you were in trouble again 3 hours from now!!

Decide ahead of time how much you want to learn about your condition and then learn. Ask questions of the medical staff, of folks here, and do some research on the internet yourself about MG and any other medical term they come up with.

Unfortuantely, MG is not an 'infection' - something that gets cured within a short period of time and the body moves on. What you (and all the rest of us here) have is more like a condition. We must each learn how to manage our medical condition - cuz like it or not, each one of us is effected by MG to a different degree on any given day. And we each respond to medications / treatments differently.

Once you have MG; you must learn how to manage it for your body. What works for you may or may not work for someone else. And how your body tells you its about to flip out will undoubtedly differ from the way mine tells me. Like Brennan said, 'Quit with the denial.'

You are a smart, terrific person - who happens to have had their life turned upside down by MG (for the moment). But thinking that you can go back to yoga and running and other physical activities is not your reality right now. And everyone here worries that if you keep pushing it, you could risk a serious, crisis that comes on too fast for you to react to.

We like you too much for that to happen!! I'll get off my soapbox now....be a good patient and learn as much as you can!!

Sue

very well said,
 

I think also that one of the problems with this illness, is this nature of coming and going, and making you ask yourself sometimes, if you may just be making "much ado about nothing".

we each can have reasons why we feel uncomfortable about asking for medical help, when we are not sure that we really need it, and maybe things will just get better on their own.

I know for instance that in retrospect there were times when I dangerously ignored my symptoms and kept on with my life "as usual" , because as a physician I felt uncomfortable bothering my colleagues needlessly.

it is true that there are many times when you can "get away with it" and gradually recover on your own, but there are times when you don't and in the early days of your illness, you don't know how to safely recognize and know the true severity of your symptoms. when it's OK to do what ever you want, when it's time to just rest for a few hours, when it's time to take "time off", and when it's time to ask for professional help.

all this together can make you feel very helpless and lost.
with time you learn, and each of us has his/her own learning curve.

its good to have a good neurologist familiar with the ups and downs of this illness, as well as "experienced" patients to guide you. even though as you say, each has to find what works best for them.

alice