From Elisabeth, since she is so good with words anyway....
James and I just got back from the neurologist's appointment. Unfortunately, we received the diagnosis we didn't want to get. James tested negative for both MS and for NMO. That means he's been diagnosed with an undefined autoimmune illness. On a practical basis that means that they don't know how to treat him. The drugs for MS treat weird T-Cells and the drugs for NMO treat weird b-cells. The doctor flipped a mental coin and chose to treat him in an MS-like manner for two months. After that he will go through all of the same diagnostic tests (without that fun lumbar puncture). If his condition either isn't improving or is getting worse they'll pick a different family of drugs to treat him with.
On Monday we're going back to the doctor so that James can learn how to give himself the appropriate shots.
By the way, he is now able to see red lights so he may be driving again. That means that all of his abilities have come back to the appropriate levels except for the one.
He's also trying a new pain medication. Almost all of the nerve pain is gone, so he's no longer taking the neurontin. However, he's still in a lot of pain. The latest theory is that his organs are spasming to cause the pain, so the new drug will address that. Yesterday and today his pain was moderate for most of the day. Then, within a five minute period of time, it shot up to the point that he was panting, unable to speak because he couldn't get his thoughts together and unable to make decisions for himself. Yesterday I wasn't home so he only ate half of a lunch because he couldn't figure out what goes with the sandwich that the girls had made for him despite the fact that the fridge was filled with options. He stayed at that level of pain for a few hours and then it went away as inexplicably as it came. It's obvious that he does better when I'm here to give him options on managing pain so I'm not going to leave for the whole day like that for awhile.
Thanks so much for your prayers.
Elisabeth
