I was thinking some more last night about what is described about breathing consciously instead of automatically. That is a perfect description of how we end up having to accept what is less than normal. When you have muscle stiffness you go to a masseur. …..when you´ve pulled a muscle – you go to a physiotherapist - but when your breathing muscles are quitting on you you are just left to think about and work through the issue by yourself!!!!...Nice!!!

Anacrusis

I get all of the same symptoms, quite often also (I am on IVIG but am not responding to treatment). I always start my day like a "normal" person but then often by 10AM I am taking 3 small inhalations for every exhalation and I get terrible chest pain across the sternum and along the ribs. I lose my voice over the period of the day, and start to get excessive secretions in my throat because I can't swallow my saliva (I'm not on mestanon).

And yes, Lawgirl, I also wake up gasping for air and some nights have difficulty falling asleep because I can't get comfortable.

Also I notice that sometimes I am so tired I skip breathing and hold my breathe because consciously breathing is exhausting.


It makes me feel better to know that I am not the only one with breathing difficulties on here- sometimes it seems like most people just have issues with their limbs. It is extremely frustrating and scary that I can't breathe sometimes and I never know how to handle it because I have been hospitalized 12 times this year for being in crisis and the local ER never quite handles it well.

Do you have a pulmonologist? Why weren't you given a Biapap?

Alice, would you mind changing your specialty to MG and moving to Georgia?

alice md;

Can not find Biapap in Medical Dictionary. Can you show me where I can find it.

Thanks;

scrubbs

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.

Alice my pulmonologist is a wonderful older doctor who doesn't believe that I have MG, but rather all this is "anxiety". He is the director of pulmonology at my local hospital and no other pulmonologist will see me because they won't "steal" a patient.

Although I love my neurologist, I can't stand her assistant- I can never get a phone call back even to make an appointment. I am completely frustrated and extremely angry as this has been going on for months.

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,