Check-in
Monday at 4pm and every drop of urine was collected for the next 8 days. Blood tests were taken twice.
The main reason I agreed to this visit was to see if I could get some relief. Besides insomnia, I was having muscle spasms all in my back and my metabolism was so messed up it would not let medicines by mouth work. Pain was keeping me awake and trips to the ER were nerve racking to say the least. My doctor refused pain injection. This is not uncommon. Most doctors at the ER think you are there for the narcotics & you start making circles.
Back at the Research Center
After one bad episode, where even the nurses did not seem to understand my pain, I reached the point of having a crying fit and taking a long, long walk to deal with the pain. They had to page the "professor," who was in conference, and wait for his return call to prescribe medications (that I could have brought from home and were not working). Then a long wait for the pharmacy to send up the order, which was again in pill form, and again did not ease the pain. After my husband demanded to talk with the doc, I got an injection. By the time I got it, I WAS REALLY READY TO GO BACK HOME.
For my husband and my daughters as well as all the young children who have this illness, or will inherit it, I stayed.
By now it is the weekend.
The first urine collection showed the count was up. I demanded to have standing orders for a shot left with the staff over the weekend just in case the prof was not available. http://hometown.aol.com/heyjude957/aip.h...
The highlight of the whole trip for me was meeting two sisters that came in for 24 hours. I was curious about the treatments they were having. One the FDA has approved is Heme Agrate. It is administered by drip & only takes a few hours in the clinic most times. However, since the sister forgot to bring her medication for nausea, they had to administer a shot of Fenegren and she got to spend the night.
