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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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05-15-2013, 09:01 AM | #21 | ||
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05-15-2013, 12:39 PM | #22 | ||
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QUOTE=Fortunatos;983680]It most assuredly is, Maiden...! Note that Sandy asked if there was anything she could bring on her trip. Let's suggest she take all of us! [/QUOTE]
I've got a giant suitcase! |
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"Thanks for this!" says: | cait24 (05-15-2013) |
05-15-2013, 10:25 PM | #23 | |||
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05-15-2013, 11:57 PM | #24 | ||
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I had been worried about dire emergencies with no possibility for medical attention but that would be even for a domestic flight. It's encouraging that you got through that easily (It sounds like you didn't have symptoms on the flight?).
As far as being drained or otherwise symptomatic on a vacation, that just gets annoying and can require long recovery sooner or later (often of the sleeping and rest variety) but if the trip is for a limited time and you can enjoy it, it has some value. However much I like meeting new people, I'm not up for the plane ride much less being packed in a hot suitcase. I hope you guys all enjoy your trip to Italy! |
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05-16-2013, 09:32 AM | #25 | ||
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Heat Intolerant said, "...I had been worried about dire emergencies with no possibility for medical attention but that would be even for a domestic flight."
Hello Heat Intolerant, I fly because it gets me from a to b, quickly. My health experience flying, well, I've never encoutered any problems, and further, it's one of the rare times where I am forced sit and relax. I do the crossword puzzle. If it will help to allay your fear, please know that the airlines have oxygen on board, emergency equipment, people well-trained in first aid, and, they can and will land a plane if it is deemed a dire emergency. This is extremely rare. |
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"Thanks for this!" says: | sandy56 (05-16-2013) |
05-16-2013, 10:04 PM | #26 | ||
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Heat Intolerant said, "...I had been worried about dire emergencies with no possibility for medical attention but that would be even for a domestic flight."
Hello Heat Intolerant, I fly because it gets me from a to b, quickly. That is why people do it in general. My health experience flying, well, I've never encoutered any problems, I have. and further, it's one of the rare times where I am forced sit and relax. I do the crossword puzzle. I had the experience of waking up from sleeping on a plane and immediately realizing I had an emergency. If it will help to allay your fear, please know that the airlines have oxygen on board, I never had an experience where the airline didn't have oxygen when I needed it, nonetheless, after having emergencies, I later read that some don't. There is a sentence in the following which says not all planes do: http://www.aeromedic.com/travel-oxyg...ational-travel I do not have fear for another person. I used the word "worry" a little more generally to convey that it can be an issue for someone with MG. The medical literature has reported problems in enough patients that it is worth mentioning on a forum if someone brings up a concern about a trip. emergency equipment, people well-trained in first aid, and, they can and will land a plane if it is deemed a dire emergency. Well, yes. They do however tell you what it will cost to land the plane. They charge the passenger with the emergency. It's prohibitively expensive. This is extremely rare. I do not know the statistics. But here is one case report: http://archive.ispub.com/journal/the....FmOCR4tm.dpbs I do not wish to annoy anyone and Sandy may not or even probably does not have this problem in particular. Nonetheless, it serves to at least mention the medical literature on the issue because some or all of this information may be useful for somebody else at some later date. |
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05-17-2013, 12:26 AM | #27 | ||
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Hello Heat Intolerant, and thank you for the interesting post. I'm not sure I understand why you think you would annoy anyone. You have as much right to express your feelings, and to share your experiences, as anyone else on this forum.
In the link you provided, we note that the woman was extremely ill, prior to departure. It appears that medical personnel felt it, worth the risk, to transport her to a larger centre--it must have been a diffcult decision. Information gathering is vital. I agree with you; we need all the reliable information we can get, so we can apply it to our own circumstances, and to our own decision-making processes. While anything can and does happen "in this best of all possible worlds..." I feel it's important to know, what is common and what isn't. |
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05-17-2013, 12:54 AM | #28 | ||
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Grand Magnate
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When hypoxemia occurs, it puts a strain on the heart, brain and other tissues. Yes, it's important to know that it won't affect the "majority" of people adversely - at least that they know of since they don't all carry oximeters on a plane - however, it does indeed affect people with MG. And that's the important point in this discussion!! It is common for those with MG to experience some adverse effect while traveling. There are many insidious adverse effects of lowered oxygen in the body up in a plane or on the ground. Simply because you might not "feel" it or be aware of it, doesn't mean it isn't serious. If you've never had an "incident" on a plane, perhaps you can easily dismiss all of the cautions being given here. Perhaps you've never had a choking fit on a plane and not been able to stop for 10 minutes, like I have. Or had chest pain from your O2 dropping into the 70's. And I'm not old, like that woman in the example. Not all planes have oxygen. It always takes planning ahead of time because even if they do have it, they won't give it to you without proper authorization from a doctor. Arrogance is dangerous. When you do research on these topics, everyone needs to be thorough and not assume that you can point to a statistic to "prove" that all will be okay. I've had trips where I'm "ok." I've had trips when my MG has been stable when I could barely walk during them. There is no algorithm for MG. Sandy, If your pulse is high while sitting, that means your heart is working harder to get your body oxygen. Know what your normal resting pulse and BP are before the trip. And that goes for the plane or while on the ground. Don't forget that MG has a cumulative effect as well as an immediate "do this, get weak" one. I hope your mini-trip went well and that you can go to Italy. It's gorgeous there right now. I love this website, particularly Pecetto Valenza and Pietra Marazzi! http://www.stefanome.it/ Annie Last edited by AnnieB3; 05-17-2013 at 01:41 AM. |
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"Thanks for this!" says: | Heat Intolerant (05-17-2013), sandy56 (05-17-2013) |
05-17-2013, 07:25 AM | #29 | ||
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My husband has contacted the airline and is arranging for me to have O2 available for the plane trip. We also found there is an MG expert in Milan. The Italian friend I am going to visit has an MD nephew in Milan who is going to contact him about me. I have tried to do as much as possible to be safe on this trip. All the suggestions from the group have been most helpful. Thanks to all of you Sandy |
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05-24-2013, 10:20 PM | #30 | ||
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Bringing this thread forward for a few people here who are interested in reading it.
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"Thanks for this!" says: | sandy56 (05-25-2013) |
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