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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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05-16-2009, 12:35 PM | #1 | |||
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Hey Pat! Welcome and THANK YOU for giving the rest of us hope! It is always so great to hear from someone who is upbeat and feeling well!
MG is such a tricky little disease, but there is always HOPE for remission and a "normal" life........ Neurotalk is an amazing site! I am so glad to have found it!I am also so glad you found US! Take care! ERin Quote:
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05-16-2009, 07:00 PM | #2 | ||
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Thank you for such a warm welcome! I am not use to being able to reach out to anyone no less so many understanding and kind people about this disease. I started to cry when I read the replies to my post...I was so overwelmed. There was so much I wanted to say in my post, but I didn't want to ramble on so I made it as short as I could. You are so right about this being a 'tricky little disease'. As 'well' as I've been, I did go into a crisis and spent 5 days in ICU. It hit me with little warning and once I recovered, I went right back to feeling like I was before it happened. That will be 3 years ago this August...the heat was a big factor. I once read where a doctor wrote something to the effect...It's the constant unexpected of this disease that makes it so insidious... I truly understood what he meant after I was blind sided on that day! (: I apologize for rambling on, but thank you so much for listening. It felt so good to actually put that in writing knowing the person reading it really understands. This is an amazing site! I hope you are feeling well, Pat |
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05-16-2009, 07:09 PM | #3 | ||
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Thank you for such a warm welcome! I am not use to being able to reach out to anyone no less so many understanding and kind people about this disease. I started to cry when I read the replies to my post...I was so overwelmed. There was so much I wanted to say in my post, but I didn't want to ramble on so I made it as short as I could. You are so right about this being a 'tricky little disease'. As 'well' as I've been, I did go into a crisis and spent 5 days in ICU. It hit me with little warning and once I recovered, I went right back to feeling like I was before it happened. That will be 3 years ago this August...the heat was a big factor. I once read where a doctor wrote something to the effect...It's the constant unexpected of this disease that makes it so insidious... I truly understood what he meant after I was blind sided on that day! (: I apologize for rambling on, but thank you so much for listening. It felt so good to actually put that in writing knowing the person reading it really understands. This is an amazing site! I hope you are feeling well, Pat |
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05-16-2009, 08:08 PM | #4 | ||
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Hi Pat,
Glad that you have found this site, it is an excellent support system! Take care ~ Melanie |
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05-16-2009, 08:39 PM | #5 | ||
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05-16-2009, 09:09 PM | #6 | |||
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Hi Pat and welcome, as you can see we are a friendly and talkative lot(well I'm talkative as long as I'm feeling up to it, if I'm having a bad day, I sit and read, but dont sometimes have the energy to post)
take care Kate
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Outside of a dog, a book is a man's best friend. Inside of a dog, it's too dark to read. Groucho Marx |
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05-17-2009, 12:48 AM | #7 | ||
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Thank you for taking the time to reply to my post and to welcome me. I understand completly. I hope you are feeling well. Take care, Pat |
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05-16-2009, 08:10 PM | #8 | |||
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No problem - that's what we are HERE for!
I truly love this site! Before I found it I was so scared all of the time - scared and angry, but this site has been amazing! The amount of support has been unbelievable! Did you have your crisis while on meds? The thought that a crisis could hit at any time is so very scary...........ICU is a scary place. A very scary place. I try and block out as much as I can in order to stay sane! You are so upbeat! It is fabulous! And you give us HOPE!!!!!!! Do you realize how important that is to all of us? THank you! What meds are you on now? How are you feeling? Thank you for being my friend! Erin Quote:
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05-16-2009, 09:31 PM | #9 | ||
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[QUOTE=erinhermes;511171][FONT="Book Antiqua"][SIZE="3"][COLOR="DarkGreen"]No problem - that's what we are HERE for!
I truly love this site! Before I found it I was so scared all of the time - scared and angry, but this site has been amazing! The amount of support has been unbelievable! Did you have your crisis while on meds? The thought that a crisis could hit at any time is so very scary...........ICU is a scary place. A very scary place. I try and block out as much as I can in order to stay sane! You are so upbeat! It is fabulous! And you give us HOPE!!!!!!! Do you realize how important that is to all of us? THank you! What meds are you on now? How are you feeling? Thank you for being my friend! Erin Hi Erin, The only med I take for the MG is mestinon. The day of the crisis I was so sick I couldn't keep water down, no less a med. It was the third day of 90+ degree heat and no airconditioning...big mistake. I thought when it cooled down I would start feeling better. Later that evening I went to get up to get a glass of water and the feeling that came over me, I never want to experience again. That was on a Friday and the next thing I remember was waking up in the ICU on Sunday morning. It is a very scary place. When they asked me if I knew who the president of the United States was...I almost said Richard Nixon, but I caught myself in time and gave the correct answer. Then they asked me if I knew what the date was. I didn't, but right behind the doctor was a huge white board with the day & date on it, so I answered that correctly too. I could go on and on about that experience, but I'll spare you. hahaha The only way I've been able to keep my sanity with this disease is with humor...most of the time. To answer your last question...today was a very good day! Thank you for being my friend & take care. Pat |
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