[sandy56]

I have a new diagnosis of MG (2 days) I am on mestinon and prednisone.I have a long planned trip to Italy in 3weeks. I have a follow up appointment in 2 weeks and if things are going well my doc says I can go. He says my disease is mild and that I have to live my life. I just ordered a medic alert bracelet and have a wallet card. I will be there with a native Italian who can translate. I am not sure what else to bring. Any help would be appreciated.
Thanks
Sandy

[Heat Intolerant]

How is your breathing now on meds?

Will you have access to oxygen if you have a problem on the plane?

I would imagine the whole thing would be easy (or easier) to contemplate if you felt your disease was stable and you don't have worse breathing sometimes from one moment to the next.

[AnnieB3]

Sandy, I honestly don't know why I'm even giving any advice since you've made up your mind anyway.

Anyone, whether they have MG or not, can have their O2 tank on an airplane. It has to do with pressurization, air speed and, well, greed because they save money on fuel by manipulating those things. There are many articles on hypoxemia and pilots. Who cares about passengers.

When I went to Europe, I had an oximeter with me. I highly suggest you get one too, if you go. Sitting in a seat at 38,000 feet, my O2 was in the 80's. When I walked to go to the bathroom, it went down into the 70's and I had a "little" chest pain. The risk of a heart attack or stroke from a low O2 is very real. Have you had your heart and breathing assessed by experts (cardiologist and pulmonologist)? Did they do breathing tests in the hospital?

You can't only take the "ok" from your neurologist because you really need that from a pulmonologist. Why? They are the ones who assess breathing and can write a script for O2 on a plane. Neuros do NOT do that!!

I can understand someone newly diagnosed with MG thinking that they are now superwoman because they have a diagnosis, a doctor and drugs but the fact is that MG - contrary to what Dr. Franklin said - is not "mild." You can't tell by a stationary patient what MG will do to them once they are mobile.

It would be quite easy for you to go into a full blown MG crisis on a trip. No, I'm not being negative but realistic. Things are not "stable" for you yet. And, frankly, you haven't been on drugs long enough to know when that will happen.

So that's my typical newbie "lecture," sent with great kindness and concern. Do what you will with it.


Annie

I forgot something. Long distance travel like that, especially if you're on a steroid, can wreak havoc on the adrenals. Jet leg is simply your adrenals becoming confused because they don't know what time it is and if they should put you to sleep or not! It has to do with cortisol levels and the normal pattern of them being higher in the morning when you should be awake and lower at night when you should be sleeping. Travel to another time zone disturbs that normal balance.

The hardest adjustment would be while there and then on the way home. I had an adrenal "crash" so bad during the flight back and after I got home that I couldn't stay awake for ten days, had horrid sweats (another adrenal crisis symptom) and my muscles were much weaker. I got better but it was pretty horrendous. If you feel that way, you should ask your primary doctor to check your cortisol levels.

This can also happen when a patient is taken off of Pred too quickly (too much of a dose decrease). FYI.

[wgreen19]

Originally Posted by sandy56

I have a new diagnosis of MG (2 days) I am on mestinon and prednisone.I have a long planned trip to Italy in 3weeks. I have a follow up appointment in 2 weeks and if things are going well my doc says I can go. He says my disease is mild and that I have to live my life. I just ordered a medic alert bracelet and have a wallet card. I will be there with a native Italian who can translate. I am not sure what else to bring. Any help would be appreciated.
Thanks
Sandy

Sandy, just like MG appeared one day and presented itself to you, when you least expected it, so can't and won't your symptoms. You, me, your doctors don't know how fast your MG will progress, or when you could go into crisis. The one thing that you, I, am most of the people on this site, and similar sites do know is how difficult it is to find a Neurologist who specializes in Myasthenia Gravis; therefore, is flying 3,000 miles or more going to insure that should you need additional support and care while you are abroad going to deliver you the type of medical support and care that we with MG require when it was so difficult to find a good one to start with? I think not. I think you are not facing the realities of this disease, and or how it can and does progress. I believe that you should sincerely reconsider this trip, as you are playing a dangerous game. While it might be said that life is for the living, and that we have to live while we are young, when we are confronted with the harsh realities of MG we have to respect that importance of life and live to fight the battle another day, as there will be plenty. I, stupidly, flew to CA shortly after being diagnosed, and it was one of the most careless things I have ever done in my life; I hope you will reconsider.

[neutro]

Hi Sandy,
3 years ago, I flew from France to Canada while on Pred, Mestinon and Cellcept for a one-month stay at our sonīs home in Montreal.
4 years ago, I also took a one week vacation tour in Sicily from France which included a flight.
I have a generalized myastenia since 2007 but without any peculiarity except a relapse 3 months after the Sicily trip due to a pneumonia shot.
I never experienced anything abnormal during these 2 trips and we are booked for a Mediterranean cruise end of June for our 50 year wedding anniversary...
Each time, I took the following precautions:
-carry ample supply of prescribed drugs,
-bring a copy of each prescription,
-have some litterature and references on myastenia with me
in your case, see for example
http://www.orpha.net/consor/www/cgi-...raphicType=Cnt
With a little browsing in this site, you can have adresses of reference centers in Italy and patient organization plus print some documentation in Italian.
-be covered by a comprehensive insurance which covers pre-existing illness.
This is my personal experience which is different from those reported above...
Should you go, have a good trip!
Maurice.

[cait24]

I am having the same worry about our usual summer trip to Busch Gardens Virginia where I have to drive 6 hours. I am not sure how I will be affected. Has anyone taken a long driving trip since being diagnosed with MG and how did it go?

thanks
kathie

[AnnieB3]

Maurice, Your experiences were different probably because - and correct me if I'm wrong - you weren't a newbie. Those are very useful suggestions!

The key is whether or not someone with MG is stable. Even if it is, stuff happens.

Kathie, When you drive, you're using a lot of muscles at once, so it's more of a generalized weakness that follows. Also, you have to take double vision into consideration, if that's an issue for you. I hope someone will do the driving for you.

On a general note, when MG gets bad, it's like driving drunk. Response time is reduced and it's dangerous to be behind the wheel.

Whatever you decide, Sandy, just be safe.

[robocar]

Kathie,

Last fall I drove an 8 hour trip with my husband. We stopped almost every hour to walk and rest and did the drive in 2 days. By day 3 of my vacation I was having double vision and was very weak. I am very well controlled but had to call the neurologist and double the prednisone so that I could get back home. Be careful.

[sandy56]

Originally Posted by AnnieB3

Maurice, Your experiences were different probably because - and correct me if I'm wrong - you weren't a newbie. Those are very useful suggestions!

The key is whether or not someone with MG is stable. Even if it is, stuff happens.

Kathie, When you drive, you're using a lot of muscles at once, so it's more of a generalized weakness that follows. Also, you have to take double vision into consideration, if that's an issue for you. I hope someone will do the driving for you.

On a general note, when MG gets bad, it's like driving drunk. Response time is reduced and it's dangerous to be behind the wheel.

Whatever you decide, Sandy, just be safe.

Annie and Maurice thanks for the suggestions and warnings. I do have a pulse ox and peak flow meter. I have been doing really well on the mestinon but know I still have to watch it. I plan to get lots of written info together to take.

We are retired military and Aviano AFB is very nearby. They have a large military medical center. I am taking a short trip this weekend to "try my wings". I will be taking a 2 hr flight to see my son for Mother's day. This will help me decide about the longer trip to Italy.

[sandy56]

Originally Posted by Heat Intolerant

How is your breathing now on meds?

Will you have access to oxygen if you have a problem on the plane?

I would imagine the whole thing would be easy (or easier) to contemplate if you felt your disease was stable and you don't have worse breathing sometimes from one moment to the next.

My breathing has been generally good. I had been having some low O2 sats at night until I started mestinon. Now my O2 levels stay in the mid 90s at night.