Myasthenia Gravis Questions
 

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!!!

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,

I am very sorry for your loss. I send my deepest sympathy to you and your family.

I'm so sorry for the loss of your mother.
Kathy from PA

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

Hello Manatee: The death of a loved one is always sad; especially when they have a cronic debilatating illness. She is pain free and that's something to be grateful for. I'm 75 and had MG since 9/2006. I'm COPD but have not had any lung function problems. My difficulty is muscle weakness and walking difficulty. At times I need a quad-cane for stability. I'm currently on steroid therapy which will end soon. I don't know what the result will be; hopefully I will improve overall. Willyarty

To interbate or not
 

Manatee: I can understand you deep concern regarding your mother's refusal to be inturbated :) . I have had to seriously consider aggressive action in the event I become unconscious. At my age (69 going on 76) with all the medical problems I have, quality of life is very important. I qualified my decision with a firm rule: if I can be taken off the respirator within 5 days and brought awake then okay, otherwise no. My wife would go further in medical intervention than I but she respects my decision. A significant reason for my decision lies in the fact that I'm a Christian with a close personal relationship with Jesus Christ. Therefore, when I die, I have to go to heaven as there is no other place for me to be. Heaven is not a goal it is a provision by God. Second, my decision was also based upon understanding 'quality of life.' I have seen too many loved ones languish in a nursing home just waiting to die. Despite good nursing care, where is their quality of life? Perhaps you mother considered this aspect. Be at peace and trust that your mother made the best decision she was able to make at the time. Also, in time, you will possibly be confronted with a similar decision for yourself or another. Your experience will help you and others who have read your query. God bless.:)