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 )


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

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.

This subject of "flying" is close to my heart/experience....hindsight is certainly 20/20....there was never a reason found for my sudden inability to walk up the long tunnel to the concourse; my husband thought I was just a chicken, (& I was, lol); this was a reproducible frequent occurrence.....after a wonderful visit to the grand canyon in '89, a tour plane with those long vertical windows & an hour flight, resulted in my sitting in the seat totally unable to get up or move a muscle...the captain was so patient, he waited for 25 or more minutes for me to try to get up & exit the smalll plane...I was so embarrased I wanted to just cry while I sat there, but I could not move, literally....my friend Jean & the captain were just great while they waited for me to recover..what a trial!!! & never a reason 'til now..since my diagnosis via SFMG, so many things pop into my mind that happened thru the yrs, but until it fulminated in 'o6, my thought was I was just easily fatigued, but always knew "something was wrong"....consider my self fortunate that I could continue my career in spite of this unknown challenge....it now leaves me with so many questions 'bout CMG, since it can be hindsighted to my teens. a very long time ago, lol................

Dottie

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.


Annie

Thanks for your response, Annie....been thinkin' CMS for quite awhile now, all antibodies are negative, but my neuro guy, tho a very pleasant & courteous Asian fellow, is difficult for me to communicate with...now that my hearing is failing & clarity is a problem, I don't get lots that ppl say 'round me, so can't really understand him much; & he is such a nice guy...unfortunately no pics, but, when in my late teens, my optician diagnosed double vision with loss of vision in one eye....spent next 5 yrs working with him & those machines to correct it...it did get better, & did ok in college & later in vet school...never will know how I did all that, lol....only one neuro saw ptosis with me, but he was ousted from the practice & I don't know where he is..also oriental but easier to understand (prob more americanized) & he's the one who ordered the SFEMG that gave me the dx....oh well....so it goes

Dottie

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

Hi Anacrusis, yes, I've flown since sev'l times, but after a serious walking/dypsneic problem in the Charlotte Va airport, my neuro practically ordered me to not even try to walk like that again, so now it's a wheelchair, which I truly dislike, but is obviously nec....the flights are ok if I meditate somewhat, but very weakening, difficult to walk out to that wheelchair again, lol.......I'd rather drive...

As for medication, can't take the mestinon cuz I'd never make it on a plane with it's side effects, & it doesn't help enough to even try....haven't been on any other since I had adverse pblms with streoids & with my history, I don't want to try anything else....

BTW, all my pulmonary tests taken via 2 pulmonologists were normal; immediately after that last one, I got up to leave, was so weak I almost fell....2 nurses helped me to a stool to recover, which took sev'l minutes...but did that get into the record?? of course not, & that same technician was brutal to me, pushing me & claiming I was not trying, which of course was not true...& so the story goes....but then you know 'bout that, right??

Dottie