Just an update since it's been awhile.
James is down to his normal everyday pain levels.
It's very clear that he heals in his sleep. Every morning he wakes up and he can't see a thing. Then he puts his glasses on and realizes how much more he can see from the day before. His sense of smell and balance are completely back. The numbness is completely gone from his legs (although with today's cold weather he was wishing that his feet were still a little numb). The tightness across his chest and the pain in the skin of his back, abdomen and chest were the first symptoms to normalize.
Today's appointment was a complete waste of time. By the time the doctor saw us on Friday, his office was closed. Normally his staff does a lot of the details that Dr. Black needed to do for us. He asked us to return today so that James could learn how to give himself his own injections. He has been dreading it, knowing that intra-muscular shots are deep. When we got to the office we found out that the office staff doesn't teach anyone how to give their own shots. Instead it's the home health care staff that does the educating at a home visit. The only thing that we lacked was a form that needed to be filled out, so I filled in name, date, address, and phone number and went home.
The drug manufacturer is the one that sets up the home health appointments in this case. They called James to tell him that, while Blue Cross/Blue Shield normally does cover the drug, they still aren't sure which method of delivery our particular plan prefers. If they allow it to be purchased from a drug store we can start injections tomorrow. If it needs to be purchased directly from the manufacturer then it will take at least two or three days--so the dread is prolonged. The rep also mentioned that the injections hurt like heck. Thanks, so much.
Then we got the run-around at the durable medical equipment pharmacy. We were told when we went in on Saturday that we needed to wait until Monday so that the woman who deals with insurance companies could properly bill for it. Apparently the doctor filled out the prescription wrong because he didn't mention one detail and the lady was very upset with the man who let us purchase enough to get us through the weekend without proper paperwork. I have the feeling that heads will roll over that "huge" gaffe. Anyway we ended up going home $100 poorer with nothing to show for it for the next three or four days until our order arrives. Our primary form of exercise these days is doing the run-around.
Our current goal is to refine the drug cocktail James is taking. He's been off of the neurontin since Friday's visit--the only nerve pain he gets is from the pin-prick tests they give him. We never thought that the Oxybutinin was working, so with the doctors permission, he quit taking that yesterday. He'll probably quit taking the anti-spasmodic tomorrow, since we don't think that makes any difference either. There's another drug that we dropped that we added back into the mix. In a few days we're hoping that he will be down to only three or four drugs, plus OTC painkillers and the shots. He will be taking a ton of vitamins and supplements, though, for at least the next three months.
Hope that wasn't too much information for you. With all of the details that we have to manage I find that I review the schedule over and again. Normally, once I write things down I quit worrying about missing something important, but we have nine times every day that we take a break to do something for James' illness so even writing it down doesn't seem like enough.
Anyway, thanks for all of your prayers and support.
Elisabeth
PS Nancy, you might want to check out this website for your research:
http://www.lef.org/protocols/neurological/multiple_sclerosis_01.htm Also, one of our favorite books is the Nutritional Guide to Natural Healing.
Oh, and one more thing, Dr. Black has been giving us excellent care--he's just not a good nurse or secretary. We really are in good hands, even if he can't give us a name for the illness.
