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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#10 | |||
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Junior Member
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I guess I need to say that I have found information provided by both Alice and Annie to be extremely helpful and I do appreciate all both of you have done to help me better understand MG. Annie, I did not intend to imply that you called me foolish it is honestly something I bring on myself because I wonder at times if I am refusing to see the bigger picture. Will I be biting off more than I can chew? I have conceded to myself that I may not be able to do this and I make that clear. But I am do need to at very least try and if it is not to be I will then not be afraid to say you are correct and reevaluate where to from here.
I agree with Alice about the mental adjustment and perhaps I will learn the hard way. I have over come so much to get to a point where I have fought my body to complete endurance events including two years ago when I finished a half marathon followed by a marathon the day after. That I think is where my current mind frame leaves me. I am refusing to accept I can't and I'm trying to convince my mind and body I can! As I have said above in the end perhaps I can't but I am still going to try. I am new to MG and I consider myself lucky in some ways. I was diagnosed so quickly in part because I was sliding downhill so fast. I went from finishing a half marathon on September 6nd to double vision and having little to no strength in my arms, hands and legs in less than a month. By October 1st I had my first plasmaperesis and I remember that night laying in bed and being afraid to fall asleep because my breathing was just not right. I was lucky to find this group and I was also lucky to find a good neuro who seems to both know what he is dealing with but also listens to me and my questions. Let me add the people here have been wonderful in helping me be prepared to ask those questions and I owe a great deal of thanks to many of you for that. I honestly can say I was disenheartened when reading the responses and came close to not coming back. While I know your responses are well intended I feel they dash the hopes and dreams of some who still think we can get beyond our diagnosises and get back to a somewhat normal lifestyle. As you both have said MG effects all of us differently and some people do go into remission and some can get back to life as they previously knew it. I will continue to come back and I do value the information here. I do thank both of you for sharing your knowledge. In my case however I hope I can prove you wrong and find normal again. I hope you can understand where I am coming from and see this from my point of view. |
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