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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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New Member
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I am new and grateful to those who have responded to me. Your advice helps much. Questions:
Has anyone had an MG attack and their lungs desaturated? And recovered? Anyone over 70 with MG? These are some things pertaining to my mother, leading to her fast death. She refused intubation. Her doctor told me if she had received intubation she would have been unconscious 5 days, they would have done the plasma exchange during that time, and she would have woke up. Any comments would help. Thanks very much!!! |
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#2 | |||
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Member
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Welcome Manatee! I'm so sorry to hear about your mother. I've been coping with MG since the mid-70's, and I'm 60 now. I've only had one crisis, and that didn't quite reach the level of a full blown crisis which needed intubation. Fortunately, I was able to self-medicate in the intensive care unit with my liquid Mestinon, taking a little extra and letting it work sublingually every time I felt that my chest muscles were ready to give up.
I had to do some research on desaturated lungs, since I had never heard the term, and one web site I came across showed just how serious it is. Of course, the situation described was different since it had to do with depressurization at high altitudes and the effect on the body when the lungs desaturated. From the info given, death is described as being practically instantaneous. Here's the link, if you want it. http://yarchive.net/med/oxygen_suit.html I don't know what mechanism would have been going on in your Mother's case, unless it was that her breathing was so weak she exhaled and couldn't inhale again. If that were the case, her having agreed to accept intubation and/or resucitation would probably have saved her life. Why did your Mother choose to refuse intubation? Don't answer, if you would rather not. Hugs,
__________________
Lois . |
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#3 | ||
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Junior Member
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I am very sorry for your loss. I send my deepest sympathy to you and your family.
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#4 | ||
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Junior Member
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I'm so sorry for the loss of your mother.
Kathy from PA |
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#5 | ||
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Junior Member
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Hi Manatee,
I am so sorry to hear about your mother's death. It is so hard - my mom died several years ago and I still have so many questions. Did the doctors explain any of this to your mom so that she was able to make an informed decision about refusing intubation? If you read about Myasthenia crisis they are referring to the weakness that leads to an inability to breathe which sounds like what happened to your mom. Usually people are sick and having difficulty breathing that leads up to the crisis. If they had been able to do the plasmapheresis that may have given your mom the strength to get through the crisis and receive treatment for the Myasthenia Gravis. Did she have any idea that she had it before she was hospitalized? If not, how did they determine that she had Myasthenia Gravis? I'm sorry to be asking more questions when what you are seeking are answers. I am glad you found this place to come and to ask questions. Take care of yourself through all of this. I will be thinking of you. Gabrielle |
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#6 | ||
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Quote:
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#7 | ||
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Manatee: I can understand you deep concern regarding your mother's refusal to be inturbated
![]() ![]() Last edited by willyarty; 04-18-2007 at 01:12 PM. Reason: take out unnecessary text |
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