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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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08-27-2009, 02:31 AM
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#21 | ||
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I hope the magic potion works!
Have a fab time visiting your neice. Love Rach |
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08-27-2009, 11:53 AM
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#22 | ||
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You know that you are always in my prayers Erin. Glad that you are having the IVIG can get moving again. =)
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08-27-2009, 01:08 PM
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#23 | ||
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Hey Erin,
I was worried when your facebook said you were headed back to the hospital, but now I'm glad it's for IVIG. I asked my Mom (who has a direct line to the man upstairs) to keep you in her prayers too and she told me she's been praying for you since you were in hospital last time!! Good luck and enjoy your niece when you go away! I'm sure you'll feel great by then. All the best, ~Kathy |
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08-27-2009, 02:00 PM
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Thank you honey! You just keep up with that GOOD news and we'll all feel better!
Love, Erin  Quote:
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Erin . |
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08-27-2009, 02:01 PM
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THank you for the prayers! I KNOW that God has a plan for my life and I just need to wait and see what it is!
How are you feeling? LOve, Erin Quote:
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08-27-2009, 02:05 PM
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#26 | |||
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Nope! Just for IV IG! Then I should be ready to take on the world! LOL! We've even found a great little b & b! That way I'll have Lilli all to myself! LOL!
Thank you for the prayers! Tell your mom thanks as well! How are YOU doing? Love, Erin  Quote:
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08-27-2009, 03:24 PM
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#27 | ||
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Well my peripheral vision has improved since my last field of vision test!
 Not that I had noticed. But my double vision (constantly) is an astigmatism. So glasses should fix it. Oh and my vision is 20/20 again! it had gotten to 20/40 in my left eye with the optic neuritis.I saw the Neuro-Ophthalmologist yesterday, that's how I know all of that. He says that my eye pain could be one of two things. It's lingering since my last bout of ON or it is atypical migraines. He wants to start by upping my Gabapentin. Then if that doesn't work he wants to try a certain kind of migraine medicine. Okay my MS Neuro wants me to switch my MS care to the same hospital that takes care of all of my other specialists (other than cardiologist) so that my care can be more organized. She said that right now, today she thinks my MS is being well cared for and is stabilized. But she said that if anything changed with that she wouldn't know what to do because of how it would effect if I have Pompe or Periodic Paralysis or both. I told her about the first Pompe test and she couldn't remember enough about the disease to know if it fits (but agreed that whether it fits or not if the tests show it then I have it) but she also said that she still thinks periodic paralysis fits my weak spells. She says it's the only thing that does. And being that steroids are contraindicated in Periodic Paralysis and Pompe she is just to scared to change anything in my care and wants me to see someone who can consult with my other doctors. I agree with her and the next time I see my Neuro-Muscular Neurologist I will ask about getting that switched (that's what she suggested to do). I think I will also see next time I see my cardiologist about switching that care there too. It would be nice to have everything other than my PC in one building. But my PC is closer and amazing there is NO WAY I'm switching to another PC. They just did the other Pompe blood test yesterday, so about three to four weeks is how long they say the results should take. For me that usually means it should take about eight weeks. I can't wait that long to find out so I hope they have the results next time I see my Neuro-Muscular Neurologist. That's in about three weeks. Okay, whew that was a lot of medical updates.  And all from yesterday.So the cleaning, we are having a BBQ here on the 19th and I want my house CLEAN by then. I have a long way to go. I also want to do a cooking party sometime soon. That way I can get several ladies from around here, plan a menu, combine money, do the shopping and cook all day one day. Then we would all have lots of dinners in the freezer. I know there are a lot of women in the area who work and find that getting dinner on the table is a hassle, and for me, there are a lot of nights I'm just too weak to cook. Maybe if we could do one of these parties once a month all of our families would eat better. Oh and I'm trying to get some of my family and one of my neighbors to get together for a Halloween party. Instead of a pot-luck style each family would pitch in about $20 and I would make all the food. I have so many cool Halloween themed dishes I want to make for the party! Including a very cool cake. Of course you had to know that was coming.  Okay I really have to go and get David to take his nap now.  I can't wait to hear how much fun you have with your Lillie!Sorry for the book, you asked to be updated. lol Have a great day! Kristie Quote:
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Hi Erin
Hi Rach!
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