Finally I found the doctor with the answers, but I didn't like all of the answers. Amazingly the doctor or actually the doctors assistant was the endocrinologist. One would have thought the surgeon or the pain doc or the primary care would have the answers first, but such was not the case. Since I have so many medical problems and they all interact sometimes it is hard to know which doctor to go to; so I end up sitting in many waiting rooms with the most uncomfortable chairs in pain and sick. Why is it that doctors offices and medical waiting rooms tend to have the most uncomfortable chairs?
Anyway it seems that I had come down on my corticosteroids too fast and it was causing all kinds of my symptoms. From my hair failing out, withdrawal symptoms (nausea, stomach cramps, chills, headache,etc.), trouble keeping my blood sugars stable, lethargy and whatever else. It's amazing what having a hormone out of whack will do to me, so many things are affected and I feel so cruddy. Upping my steroids made me feel better much better and faster than any other suggestions from the other doctors. There was bad news here though, it seems that the reason that I had so much trouble with the pain is because I no longer make my own endorphins which makes my pain level higher than it would be for most people. Also in spite of taking 3x the high dose of vitamin D supplements I am still deficient. Now on to looking up and having hope and the little bit of serendipity.
I am no longer vitamin B-12 deficient and therefore no longer anemic so I no longer have to see the hematologist. I've met all my goals in physical therapy so I no longer have to go there that gives me an extra hour three times a week in travel time. I still have to exercise but no more travel. Progress-Progress
Now for the serendipity- several months ago Tom ran across an article on the Internet on how vitamin D helps the pain of Fibromyalsia,I asked the fribro group about it and some were having good luck with it so I asked the pain doc about it and he said he knew nothing about it but it was safe to try and to let him know how it worked so I tried it and it did help a little. When i next went into the endocrinologist the assistant saw it on my list of supplements and decided to test me to determine if I was indeed deficient, and I was. She prescribed a dosage and retested this last time I went in. The level is up a little but still low, so up goes the dose. Then I go in for my IVIG and find the library in Fayetteville, which has a different selection of books from the Griffin library; only to find the book "The Vitamin D Solution" This book seems to have so many answers to so many of my medical problems, I have hope and am excited to find out more. This book has turned into a real page turner for me. Wish me luck in being able to implement the ideas in this book and hopefully it will improve my life. I certainly seem to have been led to it.