Thanks Steph, Alice, Heat Intolerant, wild_cat and Annie :)


You know, wild_cat, it was much easier to follow my instincts when symptoms were more predictable, progressive and physically dramatic. I seem to have lost that same instinctual ability the minute resolution began appearing regularly between all the fluctuations…

(I do have a good instinct about your upcoming appointment though :))


Thank you for that very specific link Heat Intolerant. It must have been a pretty traumatic experience for you to need respiratory assistance whilst on board an aircraft. I can understand you not wanting to have to do anything that might bring back that experience again.

(If someone ever wanted me to inherit a rather large sum of money, I would donate a large part to MG research and save some for you to take a luxury cruise instead :wink:)


Annie, thank you for sharing your knowledge and all the experiences you have had on board.

If what I had was anything to do with diminished oxygen reserves then this would be even scarier than I originally had thought. I did register warning signals but in fact felt invincible and quite fearless even during the worst moments.

Anyway, I presume the pressing on the lungs must also be to do with feeling the higher pressure from outside the diaphragm during flight descent. I´ve never had that physiological sensation before MG type weakness began.

I did end up buying an oximeter and used it on board for the return journey. The levels fluctuated quite a bit (between 8 digits) so I´m not quite sure if I used it correctly or even bought the right one.

But what I am really quite sure about now, is the following –

• Something is not quite right if you are having any type of respiratory problems in-flight and post flight on modern commercial aircrafts

• Time is of essence especially at higher altitudes

• Even a slightly altered state of consciousness can lead to a false sense of security and well being altering symptom perception, judgement and response for appropriate action.

Have a wonderful day,

Anacrusis

Thanks....
 

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

Window of opportunity
 

:Wave-Hello:

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.

Flight problems before diagnosis
 

Hey, Dottie. I figured out in 2006 that I've had MG my entire life. I just adapted to everything physical. Did you have MG antibodies? If not, it could be a congenital myasthenic syndrome. They are genetic, not autoimmune. OR it could be MG since birth or teens. You should speak to your neuro about that. Do you have good photos from your teen years you could dig up and see if you had ptosis back then?

Yeah, it really does suck that we can't be normal. But those people were so nice to you. Maybe our disease is a good test for others to have. ;)

:hug:
Annie

Hi Dottie,

Thanks so much for sharing.....

Have you flown recently and did you have any experiences of medication immediately altering your flight experiences?

Anacrusis :hug: