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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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08-26-2009, 07:08 PM
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I will keep you in my prayers Erin. I hope the IVIG gives you that extra boost that you need so you can enjoy your niece.
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08-26-2009, 09:19 PM
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Erin,
As always, you have got my prayers, my friend! Take care and keep in touch. Huge Hugs to You, Simon |
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08-26-2009, 10:44 PM
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I'm so sorry you're felling weak and exhausted. I will say a prayer for you and I hope you feel better soon.
Enjoy your Lillie! That is if I don't talk to you before then. Have a good night. Kristie |
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08-26-2009, 10:59 PM
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I hope that the IViG gives you the strength that you so need at this time, and I hope that your trip to see your niece goes awesome! Good luck with everything and I WILL pray for you!
Btw, I clicked on the link that put up for Billie....Your story is so moving, Erin! I mean I knew pieces of it from your posts here on the site, but had never actually read it in chronological order...What were those spots that they had discovered on your lungs? Nicky |
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08-26-2009, 11:35 PM
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Erin, I hope you will feel 100% better after IVIG and will have a fun and safe trip.
Annie |
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08-27-2009, 01:28 AM
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Thank you so much! You really are a wealth of knowledge for the rest of us!
 I am so ready to see my little girl! She is my best medicine - bar none! Love, Erin Quote:
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Erin . |
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08-27-2009, 02:31 AM
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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, 12:59 AM
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Thank you honey! I really think that this is really going to WORK~I just know it!
 They never found out what actually caused the spots on my lungs....to this day when I see my hemo/onc, it still says "unspecified disease of the lungs". Whatever I caught in Belize really kicked my butt! I will never,ever go there again! That's also why I have to see so many frickin' specialists and Dr. I is so careful with me. How are YOU? Are you OK? Love, Erin Quote:
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Erin . |
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08-27-2009, 01:25 AM
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Hey sweetie! How are you? Any news?
I'm going to go CRAZY spoiling her! I've found the perfect b & b for us to stay @ while I'm there, cuz they keep the house hot - anything above 69 is too hot for me now - LOL! My aunt is flying with me as well. I wish I could take Dr. I with me, but nope! Shucks! I go to the hosp tomorrow for more lab work - hate that but it will get better! Love, Erin Quote:
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Erin . |
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08-27-2009, 03:24 PM
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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 Annie!
Hi Nicky!
Hybrid Mode
