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Old 11-26-2011, 10:18 PM #6
catie catie is offline
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Join Date: Feb 2010
Posts: 99
15 yr Member
catie catie is offline
Junior Member
 
Join Date: Feb 2010
Posts: 99
15 yr Member
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Hi Abby,
I'm sorry to hear that you're feeling poorly. I second the suggestion made by 4-eyes to challenge your insurance company regarding home IVIG infusion. I know that it would take time to have your dr. write a letter, etc., but it could really benefit you in the long-term. I'm also glad to hear that you may have help, by way of a houseguest, to get you to your IVIG infusions. I recently had IVIG infusions and had the choice to do them at an infusion center or at home. I chose at home, as it was just too difficult to drive there with my double vision. The nurse who did my infusions said that their company is reimbursed the same amount by the insurance company regardless of whether the IVIG is given at home or at an infusion center.

I also had Prednisone about a year ago and am begging my neurologist to restart me on it. Though the IVIG has helped my muscle weakness in my legs and arms, it hasn't done a thing for my double vision. When I was on prednisone I felt the best I had felt in years!! And it was starting to help my double vision.

I was one of the fortunate ones and didn't gain weight while on the 60mg/day of pred, but I was a fanatic at watching my caloric intake and my sodium intake. I still had the moon face and experienced some insomnia for the first couple of weeks. On the positive side, I had more energy and was able to get more things done than I had in some time.

Do take care of yourself and get yourself to the emergency room if you run into major issues this weekend.

Cate
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