Dottie,

So I´m assuming only people with respiratory MG problems get exacerbated weakness from flying, do you think that is about right?
I´ve flown with general weakness and didn´t notice a thing until it had spread and begun to affect diaphragm weakness................

Do you think like Annie says, once you are on the ground later on, things don´t necessarily show on the tests, or are you in fact saying that you got pulmonary testing immediately after the flight that affected you so much?.................

Yes I should know about trying hard enough!!! I´m the one that river rafted 21 days down that majestic Grand Canyon and a few years later could not even stir a casserole! Wouldn´t that just be a new thread full of fine examples of how people have been told just to try that little bit harder?!!!..........

You mentioned not being able to get up from your seat on this flight and being embarrassed, would you say then that you were mostly concerned about the physical effects on your body after taking this flight?


Anacrusis

Anacrusis, yes I concur that those of us with resp pblms do get this severity of weakness & possible dypsnea when flying.....can be very scary....I sure did quite often, not just flying but also when just going out to barn to feed my horses, & come back hardly able to walk or breathe.....& no tests for me then, testing is never done when we are in situations; make an app't, go in, sit & wait, then called in to see Dr...yeah right!! they seldom see us in a crisis.......

& yes, after that grand canyon flight, sure was concerned bout my physical being after the flight...had never had such an extreme reactional weakness & feeling of immobility before...always wondered if it being that small plane with those huge vertical windows had anything to do with it..or pressure pblms...didn't know 'til the dx was finally concluded! As I said before "hindsight really is 20:20".....

It certainly is difficult to deal with this disease, ppl do not understand if they do not actually see it happen....
Looking back, I bet that river rafting was one memorable trip....I felt that way going down the canyon on mules....had fun then.....

Hope you have a good weekend/holiday

Dottie

BTW......

Had an appointment with the phd head of neurology department at the hospital and just mentioned these problems and previous problems with breathing´in´

He said that if what I had was neurological then it would have shown on the electrophysiological tests. And I did not match with MG patients because I had had breathing problems during the day and not really anything at night.
He said that Mestinon can work in a placebo fashion when questioned why it was working so well with my breathing symptoms.

I sincerely hope that was the last time I have this trouble flying abroad and if I do get it again then it will be on the outward journey and goodness forbid not on the return flight back home.........

But I am allowed to call the hospital and have the chance to´prove myself´with a tensilon test, new SFEMG or some sort of blind Mestinon test or other if symptoms get worse again.

Thanks,


Anacrusis

PS
I didn´t bother to tell him I was scheduled for a pulmonologist appointment in a couple of days
because I´m quite sure he thought that it wasn´t necessary.

This is kind of my fear on flying now that I have been diagnosed etc.

I've flown..6 (6+ hour flights) since 2010, and haven't had any of those types of symptoms. I noticed on my last journey this past August that I got some leg cramps, maybe just from the uncomfy seats, but wasn't something I used to get.


But it's been on my mind on all of those flights. Flights are tough on the body because of those some-what sudden changes. It's one reason I don't really like flying to be honest, but sometimes they are needed lol.

I plan on flying 2 more times this summer (6+ hrs again), but I want to speak with my doctor and be sure. I also don't want my fear to stop me from doing something that I could actually be doing!

Good idea, like you say, to speak to your doctor especially if you have respiratory involvement in MG. And for those who have more severe symptoms of those muscles, they are supposed to get clearance from a pulmonologist before they fly.
2 years ago I could not fly because my muscles would not hold me upright long enough.
In the meanwhile you have a good flight :)

Had my´normal´pulmonologist test for future referencing.

The pulmonologist who is actually an open minded COPD and asthma specialist was interested in the following as well, and referred to them as neuromuscular problems:

Breathing problems starting a few years back with 9 consecutive antibiotic treatments
Breathing problems with use of sedatives, flying and during periods of muscle weakness.
He knew that it was rare to have restrictive breathing 12-16 hours after use of sedatives
but wasn´t surprised that with small rechallenge doses of sedatives there would be muscle weakness
always following restrictive breathing in that specific pattern.

I don´t think I had all the tests recommended on this thread but I had at least four (not MVV)

After a metacholine challenge test for asthma my muscles started trembling (especially the weakest ones)
then shaking quite violently and in the end even my head was nodding uncontrollably.

I have to go back for an exertion test and ultrasound of heart next week.

Good to know, thank you! I will try to get in with her before I leave (not until June and then maybe July).

I don't have problems with the muscles, and I'm not sure if my respiratory is really worse, or if it's always been at the level it is, I just didn't know it because I only recently started to see a pulmonologist (mainly so I have one in case I am ever in an emergency).


Thank you! :D