Well, I am already an MG expert ;)
I don't think many MG experts get to study it 24 hours each day, and had the opportunity to personally experience nearly every possible common, rare and extremely rare manifestation of this ***** disease. :eek:

If I understand correctly you were hospitalized 12 times because of respiratory crisis. How did they make this diagnosis? and on what grounds does your pulmonologist disagree with it?

I tend to have periods of weaker, swallower breathing each day between 11 AM and 3 PM. Then it improves gradually, reaching a "no worries" level by 5 PM and continuing good until bedtime. I take 60 mg Prednisone at 8 AM and 60 mg Mestinon at 8 AM, 12 noon, 4 PM, and 8 PM. I started my drug treatment only three weeks ago. I have no explanation for the weaker breathing between 11 AM and 3 PM. I finished a round of 5 days of IVIg three weeks ago, so that should have nothing to do with the breathing situation now. My guess is that the big dose of Prednisone in the morning is in some way effecting breathing strength. My Neuro did say that Prednisone may make some MG symptoms a bit worse before they get better....so, I'll hang my hat on that, I guess. Trying not to overthink things right now.

I think this is a very reasonable explanation and also a very good approach.
Just keep an eye on that and let your neurologist know if things get worse.
It sounds like he is on top of things.

Also, it is sometimes helpful to take the prednisone early in the morning (around 6:00 to 7:00 AM which is the normal time for your cortisol levels to be increased). it may decrease some of the side-effects. I assume that you take it later in the day. And also taking another dose of mestinon to cover the peak levels of prednisone may also help to some extent. Some neurologists give prednisone on alternate days, and this may possibly also help.

Hope you feel better soon,

These words almost jumped off the page at me.....
I went a whole year thinking I was the only one on the entire planet with this exact same diurnal variation of breathing difficulty. Thanks SO much PhotoBug for sharing your experience on this thread….

Anacrusis

A quick question.......

Do you notice it is much harder to breathe through your nose than your mouth during periods of heavier restrictive breathing? (The reasons for that happening I guess would be obvious ones) It does amaze me how you can survive with sometimes virtually inert lungs over a period of many years.......

Anacrusis

Status:
Working on finding allegiances in my own country´s health system
Working on making an appointment with a highly experienced pulmonologist abroad

Fireplace bellows!
 

The extra effort needed to take air in through the nose is like the extra effort needed to pull air through the nozzle of a set of bellows with a blocked valve!!! That´s what it felt like during all those episodes of restrictive breathing…..

http://en.wikipedia.org/wiki/Bellows

:)

I am 3 weeks out from my IVIG (usually get it every 2, but holidays make scheduling a little harder I guess! ick).. I am sooo short of breath by the end of the day and it really does cause some pretty darn good chest pain.. Yall have this?? It's just like an elephant sitting on my chests, or like my abs (which are also weak) are detaching from my lower part of my ribs (i had that sensation when pregnant - ouch).. anyhow. now that I am sitting down resting from my day it is better but , it is so anxiety provoking to not be able to breath well!!!

This thread is bordering on getting medical advice from an Internet forum. It's great that we can help each other with our experiences but only a doctor can give us answers for our own specific needs. We all have individual health profiles and it's often not only MG that is a part of that.

Also, some posts may get lost in a long thread like this. It might be a good idea to start new ones if you need specific help. I personally find it hard some days to sift through long posts like this. Too much reading while having double vision.

Anacrusis, I hope you found a pulmonologist to help you. Neuros are out of their specialty on breathing issues.

PhotoBug, There are a lot of reasons for why you might get more tired during that time of day, like diet (carbo or coffee crash), low thyroid, insufficient cortisol and lots of other things. We are mammals and our bodies do "want" a nap in the afternoon. I hope you'll talk to your doctor about all of this, since you just started meds.

Annie