I went to the doctor yesterday for a follow-up. I found out why I’ve been so sick after infusions that I was getting too much of them for about 3 months. Apparently, I was suppose to get ideal weight (120) opposed to normal weight (145) and that made a difference. 25 lbs. is significant to me! Obviously, the center had a misinterpretation of my previous orders. I am glad now that I am establishing home visits. At least it was found early. Hopefully, it didn’t damage my immune system even further. The worst part are the constant headaches and nausea/vomiting. If these continue, I could be looking at a medical lawsuit (God forbid) down the road. My neurologist said to give it another 3 months to see how I feel.
Something good came out of the visit though. I got a prescription for a scooter. After five years, it’s getting down to that and just to be used when I’m out at the park or shopping for balance. Another is a prescription of physical therapy, which I’ve put off for 3 months. It will feel good to stretch my muscles again.
Home visits for infusions have already been approved for next month. It was pretty quick but the bad thing will be the expense. My primary insurance does not support my diagnosis (LEMS) and I will have to pay 15% of my secondary insurance. What happens if it doesn’t pay? I will cross that bridge when it comes to that. One step at a time.