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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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07-14-2009, 05:55 PM | #21 | ||
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What a great article! Thanks so much for sharing it with me. Hope you're doing okay today.
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. Sharman |
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"Thanks for this!" says: | ConnieS (07-18-2009) |
07-14-2009, 06:03 PM | #22 | ||
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Hey Connie,
Thank you so much for the link. I downloaded it to my desk top so I wouldn't tie up the forum...I'm a slow reader at times. It was so wonderful and it made me cry. I hope you are feeling a little better & stronger today. Please keep us posted when you feel up to it. Take care. Big Hugs, Pat |
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"Thanks for this!" says: | ConnieS (07-18-2009) |
07-14-2009, 07:58 PM | #23 | |||
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welcome ckitty !
Awsome bunch here, they have all helped me so much ! Mary
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Mary . |
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07-15-2009, 11:25 AM | #24 | ||
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Hi SharS,
It's good to meet you! I have not posted in a couple of days either. I just didn't have enough energy. Thanks so much for the encouragement! The picture of the dollar per day is great. I read your post to my friends at work and will be reading it to my husband. The more I am hearing from everyone here the more I am realizing, I have got to take time to rest. I have my own office and my boss has told me the company would buy me a chair to put in my office so I could take a nap during my lunch hour and could have a place to rest when needed. I just have not done it. There is no excuse, I have to get that done. I don't get to stores much but I am going to have gather the energy to do that. Thanks again so much. You and everyone here have been a great help. I hope you are feeling better and have a good day. ckitty |
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07-15-2009, 11:47 AM | #25 | ||
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Junior Member
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ConnieS,
Thank you so, so much for sharing that link! I am going to pass that on to my family. It really helps to have a description like that to help family members understand. My sister recently ask me to go on a two day shopping trip with her and a group from her church. Those two days it was in the 90's outside as well. I explained to her that shopping for two days (about nine hours each day) was not possible for me. Shopping in one store was possible on a good day right now. I am going to pass on this link and I think it will help her understand. Thank you again so much. Hope you are having a good day today. ckitty |
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"Thanks for this!" says: | ConnieS (07-18-2009) |
07-15-2009, 12:08 PM | #26 | ||
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Junior Member
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Hi Maryec,
Great to meet you too! I have gotten so much great support and information already! Hope you have a good afternoon. Take care. Ckitty |
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07-15-2009, 07:22 PM | #27 | |||
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Senior Member
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What a GREAT article! Thanks so much for sharing!
love, Erin
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Erin . |
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"Thanks for this!" says: | ConnieS (07-18-2009) |
07-16-2009, 08:50 PM | #28 | ||
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Connie, that article says it perfectly - and I like the dollar analogy too! That's where the resentment of this and many other diseases come from. If you're CHOOSING not to do something because you want to that's fine, but being forced to choose just goes against human nature! That's why we all are our own worst enemies for so long - it's hard to give in to that when there is a time in memory when we didn't have to pick and choose our activity.
Thanks - I've printed it, because I find myself in the position of having to back out of a social gathering I had RSVP'd to attend this weekend so I can rest. Hopefully this will help them understand better that I'm not anti-social - just diseased! HA. Hope you are all having good days today!
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Becky |
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"Thanks for this!" says: | ConnieS (07-18-2009) |
07-16-2009, 09:29 PM | #29 | ||
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RE: Insights - I don't know how much help I will be, but I do have a couple of thoughts about the vision, etc.
First, how do you know the vision field problem cleared up? I ask because I thought mine was gone, but when I went for the 2nd field of vision test it was still there! They explained that the other eye was compensating and seeing "around" the hole for me. Have you seen any kind of opthalmalogist for this? The first one I saw wasn't a neuro opthalmologist, but he had the vision field test equipment - it's not painful at all, relatively short duration and would let you know if it really is gone or not. 2nd - this is very rare, but is something that was checked on me - the vertebral arteries split above the spine and run down the spinal canal and also up into the brain. The thought possibly the vertebral artery was being pinched off on me due to some issues in my neck. Luckily, I don't have any problem there, but it can cause a myriad of problems - weakness, balance issues, fainting (when bad), etc. It can reduce blood flow to the nerves in the spinal canal causing spinal strokes, or reduce blood flow to the brain causing many other issues. Outside of those, I'm still in search mode myself and will certainly post if there are any answers discovered through the new testing they will be doing on me. Wish I could be more help to you, now, though. Stay in touch! Let us know what you come up with, ok? Quote:
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07-17-2009, 01:58 PM | #30 | ||
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Hi,
Ive just read the link- about the spoons. Its wonderful, I had tears running down my face. Im going to send it to a few friends of mine who just dont get it. All I ever get is "you look better than you have in years" now I can reply "yes its because Im balancing the spoon budget!" Thank you so much for this Love Rach |
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