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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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08-25-2011, 10:39 AM
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Senior Member
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OK, so I can't walk. The disease seems to be suddenly concentrated in my legs. My doctor says it's time for IVIG, but I don't want to be admitted, and my insurance company will only pay 80% for a nurse to come to me. The neurologist's office is looking into setting me up at a cancer center that I can visit each day. Can anyone tell me what that will be like?
Abby softening up my kids to lend me their laptops so I can watch movies... |
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08-25-2011, 11:57 AM
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I've done it that way. you go into the infusion clinic and are sat in chair (mine reclined) and they start the iv then the ivig. it's quite simple it's the same process just not
laying in ur bed at home. it'll take the same amount of time |
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08-25-2011, 12:25 PM
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I would prefer not having to travel, which will wear me out, but being able to sleep in my own bed is going to make a huge difference. The last time I had IVIG was in the hospital (six days). I think most of its benefits were canceled out by the extreme state of exhaustion the hospital put me in.
I am surprised that my insurance company will only pay 80% of home infusion costs. I thought I had excellent (private) insurance. Abby |
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08-25-2011, 09:04 PM
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I had all mine done in the infusion center. They had cable tv plus movies to watch. They had a snack room and if you were there during lunch they provided lunch also. To have it done at home would have cost me out of pocket. Going to the infusion center was 100% covered. They were very nice and tried to make you as comfortable as possible. We have stopped my IVIG treatments to see if Imuran is working.
Mike |
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08-25-2011, 09:12 PM
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Thanks, Mike. Please keep us up on your progress. My need for IVIG means my Imuran hasn't kicked in yet (I've been on it less than five months). I'll have my dose upped soon.
I am going to have five days of infusions. They'll give me a new IV each day, right? Not really looking forward to the poking, but I can manage, I guess. I'm really happy not to do this as an inmate, I mean an inpatient. Abby |
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08-26-2011, 01:30 AM
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well, Abby if you want to/are able to keep it in they will let you. personally
I hate having it in at home so I take out almost every time unless the time in between infusions is short. They should let you keep it in, they always asked if I wanted it in or out at the end of the infusion when I did it at the infusion clinic. they do serve some food and drinks to keep ya happy although I'm never hungry during it. hope ya have fun 
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