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Old 12-10-2011, 09:42 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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Thank yall so much for taking the time to reply, it really means a lot to me and yall are really making me feel better about this whole thing!

Abby- wow, 15 months of feeling bad with no answers, that would be rough! It's been about four, well more than that of not feeling well, since I Had a preceeding illness/event, but about four since the major neuro symptoms started, and I'm irritated we don't have an answer and treatment started all ready.. so how did they end up diagnosing you? Did you ever get positive bloodwork or SFEMG? or was it just by exam? I'm SOOO excited to try the IVIG, I just hope it works, since I am just so ready to know that there is SOMETHING that can help me!!! Thanks for the advice about maybe needing to try it a couple of times!

Geode- I had an extremely eventful delivery and following events unfortunately! I was a scheduled c section (high risk pregnancy on heparin with a large baby, plus prior c section only 16 months before!), But the epidural went bad- they almost had to intubate me and my blood pressure crashed, so they had to give me a bunch of drugs to increase that and my heart rate, My breathing was compromised (i barely remember my son being born- i was on high flow oxygen), and my arms were so paralyzed that I coudln't even move them to hold him.. it wasn't fun!!
at 6 weeks post partum I was jogging feeling great!
And then about 7 weeks later I got sick with coxsachie virus- really sick with a 103.5 fever, body aches, and all the blisters that go along with it - fun! a week later I had an IUD put in, and they perforated me, so I walked around for a week feeling AWFUL before going to the hospital and I had been bleeding internally, and had to get blood transfusions and was in the hospital for four days - haha, sooooo I would say there were a few stressors in that couple of months! I came out of the hospital and felt sooo weak, thinking it was just my anemia, but once my numbers returned to normal I was still so weak I could barely put one leg in front of the other.. thats when I noticed my eyes changed shape and weren't closing at night... etc etc.. and here we are! :0!
Abby - I thought I had post partum graves- I thought my eyes were dry and eyelids changed shape because I thought My eyes were protruding from that, but we kept checking my thyroid and it was normal everytime!
Mike- thanks, its good to know that it may take a special "cocktail" to get the right fit! They kept thinking I had CIDP, which people have to do IVIG pretty frequently, So whatever it takes to help me feel better I am game!!!!

Are any of yall Musk positive???

Do any of yall have slurred speech at the end of the day or after talking a bit? i think that's what scares me the most! I did a test on myself today, just out of curiousity (thanks to exploring good ol dr google) and I stood up from sitting position (it said to do it 20 times, then rest to see if better), I could BARELY do it four times, my muscles just plum couldn't do it anymore, crazy! I used to be in shape!!!
Oh, and after a hot shower today, I did notice my right eyelid was droopier than before I got in the shower.. interesting stuff now that I"m paying attention to it!
Do yall know if there is any other testing besides antibody testing as far as bloodwork goes?
Thank yall again, and I appologize I ask so many questions!!!
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