I was surprised that initially no one would give me a referral to a pulmonologist on the basis of long term symptoms such as those described in this thread:

http://neurotalk.psychcentral.com/thread175640.html

So I didn´t think I would bother going back to the doctors again about it.
But when I did, I got another surprise by actually getting a referral in a few weeks based only on the symptoms I had on this and two other flights.

Anacrusis

I always say that you never know what you can do or have until you ASK.

Good, you need a THOROUGH pulmonology appt. A cardiologist assess someone for pulmonary hypertension but it's worth at least a question about that. It's something doctors don't always think of.

I hope they'll do all of the breathing tests necessary, including MIP and MEP. Good luck!

Annie

A different doctor and a different approach really helped....

My own doctor has been away and has a sub. I thought I would see if that could be used to my advantage and booked a new appointment.
I briefly described symptoms from my last flight, said it had happened on 3 different occasions but not whilst under the influence of Mestinon.
I then produced a copy of pulmonary tests for MG that Alice had described in another thread, patted them down on the doctor´s desk and stated:

´These are the tests that need to be done - I personally have no idea what these tests are, do you know how this can be organized?´

The appointment took all of 5 minutes.....

Have felt so well lately though that right now I wonder if the tests would only pick up something if there were triggers like antibiotics,
sedatives, being on board an aircraft, or overusing my vocal chords & muscles.

Normal tests are also a good starting reference point with any future exacerbations...


Either way

Normal tests that correlate with feeling good is the best thing you can hope for

Normal tests are only a problem if you are not feeling well.

And yes, it is very helpful to know your normal, so that there is something to compare to, if you ever do less well in the future. It is also good to have someone that knows you and your normal which you can rely on, if things deteriorate.

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!