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puppylover"When I was diagnosed I was scared didn't know what to do or where to go..I started reserching bipolar and somehow ended up here at MD....Again scared but needing to know what was in store I asked a question..WOW the people who care..I know I would be lost now if I did not join..made many friends and they have helped me through thick and thin. and never judged...........XX Thank you MD and all.Love all of you.......Laurie Pachin" (puppylover)

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bebes

Bebesday

Today in the life of a Lymie Myasthenic


May 30. 2011

May 30 2012

I guess it's time for my traditional pre-IVIG status  check.

Overall things are very good, comparatively.  I can eat some but half of what I fixed for lunch is still on the platein the micro.  I can speak some but I found myself straining to enunciate about a minute into a conversation and then I start to get nasal after a couple more minutes.  I also am having some pain in my neck because of the weak muscles.  Eyes are a bit droopy which leads to the classic head tilt and thus the more tired neck muscles.  My other body strength remains good and breathing is good too.

So for the first time I feel like my infusion will be more about improving my quality of life than it will be about saving it.   With that said I can't help but wonder if at some point we might find a status that allows me to return to work.

I should note that my wife has been sick with a cold for a few days and I started to feel some scratchy throat last night.  I don't think this will interfere with the infusion tomorrow but I am starting to be concerned that at 5 in the afternoon I still haven't received my supplies.



Previous diary posts by bebes:
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written by kshepie, May 31, 2012
WOW - hope you got your supplies. I had a treatment on the 30th and getting my second day today. My nurse will be here around 9. It's taking about 7 hours but slow is better for me. I do feel like this is helping me so hopefully I keep getting approved for the treatment from my Insurance company. Good Luck.
written by bebes, May 31, 2012
Got the shipment last night around 7:30 and started infusion today. Access through the port was a snap. I do a slow drip. Probably 6 hours. As long as there are no headaches Ithis should be a good experience.
It's still strange having someone in my home for so much time. She's nice but I'm just not used to that much interaction.

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