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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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08-07-2009, 08:53 AM
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#21 | ||
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Terrific! Hope you get a positive reply soon. Take care and hang in there.
 Hugs, Pat |
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08-07-2009, 10:02 AM
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That's great, Rach! I hope that the docs. in France can call it what it is, and you at least don't have to worry about having a shroud of mystery around the nature of your ailment on top of having to deal with the everyday irritating symptoms!
Let us know how things go, and let's hope that you can get some better treatment! Nicky 
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08-07-2009, 10:41 PM
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Rach,
Hope all goes smoothly now for you. Keep in touch. Hugs, Simon |
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08-08-2009, 02:33 AM
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Just to let you know, I had a response from the Prof, hes off from the 8th -31st August. Which I was expecting as Paris shuts down basically in August.
Once I hear more I will let you know. Thank you for all your positive messages. Love Rach |
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08-08-2009, 08:37 AM
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#25 | ||
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Sure do hope you get the attention & treatment you need..hang in there & try to stay positive....hope this 2nd opinion is the successful final step for you....
Just a note, my exertional dypsnea, ie, shortness of breath with activity has never shown the lowered stats you've had...pulse ox always stays up...last pulmonary test was "normal", even tho I was accused of not trying which interfered with the results...after I got up to leave, almost fell against the wall & another nurse helped me to a stool to recover for a few minutes, then I was ok...but that never got to the doc....wish he'd been there...but that's why we have such dr problems I guess....wish you the best of luck with this new approach..... Dottie |
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08-12-2009, 01:37 AM
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Hey sweetie! Have you heard anything yet? Are you feeling better?
Love, Erin 
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Erin . |
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08-12-2009, 02:02 AM
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#27 | ||
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I wont hear anything until September, I had an email confirming that on Saturday.
Sorry I haven't been on for a few days. I came down with a Kidney infection which left me pretty weak and then on top of that I was allergic to the anti biotics they gave me and spent 24hrs vommiting and not being able to keep anything down. They have changed my antibiotics and Im feeling a little better. Although my back is still painful at least I dont have to pee all the time! How are you? Love Rach |
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08-13-2009, 06:41 PM
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Hey hon! I am feeling a bit weak, but that is b/c my "monthly" (actually twice monthly) visitor has decided to come early and that always kicks my butt - I know TMI!
At some point I'm just going to have bite the bullet and have my left ovary removed. I just don't want to think about that b/c I am only 35 and would give almost anything for Mike and I to have a baby of our own. I'd also love to adopt or foster but don't know if the state would let me due to the MG. Other than that, things are GREAT here! My boy is finally home - finally! I have missed him sooo much! I keep going into his room and smothering him with kisses......it is going to be so hard when he decides to leave home for college. He also wants to move to upstate NY now, but that is not an option until he is 18 - only a few months away. Mike's cell isn;t working, so he has been borrowing a friend's phone, but I miss him as well. There is nothing better than being able to take care of my babies! I would love to see you with your red hair! I just got mine trimmed yesterday - it had already grown a couple of inches in the last month and a half! pred works wonders for hair growth! LOL! i'd love to go red, but I don't think it would be a good look on me! Mike will be HOME Sunday! Sunday! I can't wait! It is so hard when he is gone, but Devon is having a blast, and we have been having "Devon" days......I love that part! You have to wait till Sept? Hate that "hurry up and wait" business, but I bet you are going to be soooo happy with the results! Hope you feel even better soon! Love, Erin Quote:
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08-19-2009, 11:13 AM
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#29 | ||
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Hey Rach,
So sorry to hear of what has happened! It must be really tough, I too hate those docs treating us as if we're pretending all our symptoms. If we were all so good, think there's no need to have acting classes anymore. Lol.. The french doctors sound like a good idea, I too would do anything to get a better idea of what's going on. Just that resources are so tired.. Sigh.. But if you do go, let us all know how it goes!! Am so proud that you're doing all that you can. =) Love, Connie |
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HI Rach!
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