Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 07-14-2009, 05:55 PM #21
SharS SharS is offline
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Default Hi Connie

What a great article! Thanks so much for sharing it with me. Hope you're doing okay today.
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Old 07-14-2009, 06:03 PM #22
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Default Connie

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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Old 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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Old 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.

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Old 07-15-2009, 11:47 AM #25
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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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Old 07-15-2009, 12:08 PM #26
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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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Old 07-15-2009, 07:22 PM #27
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Smile Hi Connie!

What a GREAT article! Thanks so much for sharing!

love,
Erin
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Old 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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Old 07-16-2009, 09:29 PM #29
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Default Vision "hole"

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:
Originally Posted by Ckitty60 View Post
Thanks so much for your reply. The gray area in my vision lasted for several weeks then finally went away. I have not seen or been referred to a neuro opthalmologist. As I understand it that is not consistent with a TIA. There should be no lasting effects from one TIA, right? You can have lasting symptoms from several TIA's. Here's the thing, I have passed out before from low blood sugar and this felt different than that. When I had passed out from low blood sugar twice before everthing seemed to close in on me and go dark. This time everything seemed to fade all at once, not close in on me. I don't know if that makes any sense. Before this happened I had been having this problem that is hard to describe. I ended up having a CT angiogram because of it. When I would look up not always but most of the time, my head would start to throb and my hearing would start to fade. I would describe it this way. When you see someone in a movie portrayed as though they are going to pass out they begin to fade sound into the background. That's what would happen to me. I wonder if I was starting to pass out - I don't know. But this also happened often when I would get out of my car and start to walk into a store or wherever or after sitting for a period of time and then after I had walked a distance. By the time I would get into a store I would have to stop and stand completely still and not talk. If I was with someone I would just say, my head is doing that thing and they would understand. After a couple of minutes I could start walking again. The doctors ruled out simply a change in blood pressure and were concerned about subclavian steal syndrome. Once when it happened I just kept walking to see what would happen. I started to see stars and it triggered a migraine. I had to leave the store and go home and rest. The vascular surgeon said to never do that again. Here's the thing, ever since I have been on Topamax for the parasthesia and tremor the problem has stopped. After that day at the office I had two other epidsodes when I felt the same way again. With every one of those events my eyes felt weird. Before I was diagnosed with MG I would say that my eye sockets feel tired which would make sense with MG, right? Since I have been on 100 mg of Topamax am and pm I have not had a nearly passing out episode either (as in the three events where my eyes felt weird and I everything faded) and as I said before my head has not done that weird thing. My eye sockets still feel tired when I get too tired even with the Mestinon and Imuran. I feel the parasthesia on a mild level every day but the Topamax has really, really helped from the very first dose. Any insight? Hope you are having a good day. Thanks so much for your help.
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Old 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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