Hi Tyson,

I guess I would go to your Neuro - talk to him and ask what he feels would be:
best case scenario (no trouble at all) of your flying
worst case scenario of your flying

What are the chances of worst case in his opinion - and how best to mitigate worst case.

Asked like that - you may at least get a script for oxygen!


I have never had breathing troubles or come close to a crisis (and hope I never do!) - so I can't weigh in on this from a first hand perspective. Whatever you decide to do - make sure you are comfortable with the decision - and trust in yourself. After all - you've done quite well so far!

Sue

Hey Tyson,

Perhaps you could explain your situation with your neuro and maybe he would refer you to a pulmy. If not, and after he evaluates you, he may give you the thumbs up. Hang in there, youre doing a great job!

Hugs,
Pat

To me, it sounds like this neurologist does not have much respect for what pulmonologists do. A neurologist is not a pulmonologist. Yes, at UNC a neuro can order pulmonary function tests but they are not the ones who analyze the results - a pulmonologist does that. Been there (actually there at UNC), done that. Nor should a pulmonologist act completely alone in the treatment of MG. They need to work TOGETHER, like they do in a hospital when an MG patient has a crisis.

Yeah, you could argue that MG is primarily a neuromuscular disease and, therefore, up to neuros to deal with. If only life, or diseases, were that simple. And what if you do get a script for oxygen? Who is going to show you how to use it, how much, etc.? What problems to look for? Your neurologist?

It's completely up to you what you want to do, Tyson. Sometimes doctors do not like working together but what should concern them is not their personal preference but YOUR health. I have never gone to a neurologist for the pulmonary portion of my MG nor would I. It's not logical and can be dangerous. I do, however, bring any pulmonary concern directly to my neurologist and have them be the one who "treats" my MG. My pulmonologist is fully capable of ordering more treatments but I leave that portion of my MG up to my neuro. However, if they wanted me to have oxygen on a plane, that's when I trust my pulmy.

Again, specialists are specialists for a reason - they know more than other internists who have different specialities do. Would a football player go to an ankle specialist for a blown out knee? Would anyone rely on an internist to handle cancer for them instead of a hematologist? This topic kind of gets me angry, if you can't tell. Mainly because doctors need to start working TOGETHER to help patients and leave their egos at home.

That's just my opinion.

Annie

Hey honey!

I think it would be great to NOT be alone right now, but it may be hard so soon after your crisis......you will need to take it ez for a while - just in case!

I would take some oxygen, but totally disagree with your neuro. Mine may be overzealous, but every time I go into the hosp, he makes sure EVERY type of dr checks me out - and I really appreciate that!

Is there a family member that can ride with you? An MD that you know? You can make arrangements to have a physician ride with you to make sure that everything is OK......I KNOW I sound over the top about this one, but you are my sons age and I worry about you!

How are you TODAY?

Love.
ERin