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Old 12-18-2011, 11:38 PM
bny806 bny806 is offline
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Join Date: Nov 2011
Posts: 576
10 yr Member
bny806 bny806 is offline
Member
 
Join Date: Nov 2011
Posts: 576
10 yr Member
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Thanks Mike- I am downing more and more water right now.. they just started IVIG #3 and said they won't run it over 50

I told them last night, and agian tonight, If I'm goign to be here in the hospital either way, I could care less if it takes a while or not! I'm here regardless... but if it's going to "fix" me faster I can deal (which I don't think faster rate = fixed faster from what i've read)

Annie- thank you so much! I will deifntely talk about the LP again tomorrow with them. I had my first one only 3 or 4 weeks ago.. but they wanted it repeated since my symptoms worsened so fast this past week.. They are confused by the sensory issues associated with this all. but I also told them, maybe I have small fiber neuropathy secondary to just being pregnant a lot and nursing for a while along with the GI issue, and the weakness is separate, so they are leaving a lot of possibilies on the table I guess.
I have wondered as well about the b12- it makes sense with me being post partum and having a malabsorption issuse (possibly celiac) right before onset of all of this- but my b12 levels have been good, so they added a methylmelonic (sp?) acid level, which they say will give a more accurate reading of the b12 levels. but I may just go ahead and get one of those sublinguals, since from what I am aware of it can't hurt! thanks for the link!
I wondered if the vibration/shakey feeling is just muscle weakness/muscles pushed past their point.. Interesting about the eyebrow too! I wasn't sure if that was what an eyelid with MG does or not-- the nursing staff here all noticed my right eyelid when I got here initially and then at the end of the day yesterday dropping.. I did take a pic, and I can notice a difference- my whole face does seem to droop! I thought a few months ago to myself, man being pregnant really made me age- though kind of took away/botoxed effect my forehead some.. strange!
It is amazing how much better I do feel so far though- I feel like my strength tests were much better this morning (though I coudln't see straight with the IVIG headache)

One odd thing (a good thing I think) is when I woke up with the headache this morning I went to swallow the tylenol they gave me and i tilted my head back and swallowed big gulps of water.. I realized suddenly that huh, swallowing seems "normal" all of the sudden! I hadn't really realized how abnormal swallowing had gotten.. is that also typical of MG? I had to go get an MRI of my neck yesterday (found it odd to swallow in that position) and today one of my head (they thought they found something on the neck, but didn't ), and swallowing was now no problem in that position!!! I am getting SOOO excited that I might respond!
As much as it will be a lifestyle change having MG, or anything else that responds to IVIG.. I can deal with that and will be thankful every single minute of everyday for it.. After being told ALS was a possibility in the beginning of this all ..MG is manageable, even if it is a hard road, i"M just thankful It's a road that i'lll be able to be on for years to come, and see my kids grow!
Thank yall again so much for yalls time!!! I really appreciate it, and i'm sure i'll have many more questions!! sorry!!! This is all new territory!
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