Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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MG "Crisis " due to travel

whales86
whales86

hi. I hv'nt been on for a while sorry.  My MG has been doing really good.  My new infusion has really put me in a good place.  I had to travel for work this week and I like crashed.   Just walking through the airport by the time I got to my car I could barley move.  I ended up taking Uber to the hotel.  Fell choked on water and by the end of the day pretty much both of my eye lids won't open. 


I went to bed at like 3 and kind slept just a new place.  Got up at 6 and things seem to be back on track went to get the car and off to work. It really wasn't that much walking. By the time I got to work my eyes were already going and everything else was following.  I was so freaking out !!  Called the Dr he put me on 40 of predision which has gotten it back to manageable but my sugars are in the 400 so insulin here we go 


this has never happened to me this fasted. Now that I'm on the pred how long will it take for me to get off??? I see some of you hv horrible times getting off it. I hv weight to worry about already hv too much too


Anyone hv these issues ?


flutebell
flutebell
Sorry to hear that you had a crisis from travelling. I have come close so now order a wheelchair at both ends. I tell people I can walk short distances but not long. Being in a wheelchair means that an assistant goes with me through security and customs. I get to go through the accessible line and have no standing or walking. It has made a huge difference and I have been able to travel from North America to Europe the past three summers. I also use a folding walker for long distances out of the airport. Is it possible you could use either of these ideas on work trips? You could leave the walker in your hotel room if you rent a car at your destination. Travel and especially time changes (and I don't sleep on planes) cause me to slur my words for the first day until I get a good night's sleep. I keep folding lightweight walking sticks in my car if I have to walk long distances at work when I don't have my walker handy.

I've never been on prednisone so can't help in that regard.
Take care
Flutebell
miracleme
miracleme
Never take a crisis less seriously. Having said that, what Flutebell does is the way to do it. It is OK to tell people around you need a wheel chair. Man...look at the brighter side, you get driven around the airport! Sit back and relax :-)
Frivolous is what it sounds then pardon me, but that is the only way at looking at oneself each day, else it would be very depressing.
Yes it takes time for steroids to be tapered off. My suggestion ,silly as it may sound, speak to you medicine before popping it in. Tell that its going to make me well. Thank you so much. Tapering off generally happens when the crisis is completely over and it generally happens over weeks. Eg. I started with 80 mg, got down to 60 mg, then a crisis happened, went back to the hospital for one of the worst experiences of my life. Got back home then tapering down the steroids @10 mg per 3 weeks at a time.
if you want to know, share and experience what it is to life life with Myasthenia Gravis then feel free to read my experiences on miracleme.cpallavirao.com
Go slow. Slow down. disperse work. take less stress...enjoy life. Yes even that wheel chair ride.
All the best.
A fellow traveller
Pallavi