Mandy, I think you should take it easy! And get those new specialty docs.
http://www.lupus.org/webmodules/weba...242&zoneid=524
Lupus is not diagnosed with an ANA test. It is based on certain criteria plus antibody or other tests. Those are the specialized antibody tests in that article. Not all lupus patients test positive for all of them, not unlike MG.
I wonder if you do indeed have an active infection. The IgM is the first one to take care of infection. Have they done your Strep titer (not the swab of the throat but the blood test)?
http://labtestsonline.org/understand...s/aso/tab/test
I hope you get some answers when the tests come back. Thanks for answering all of my questions!
They might be able to look at the thymus on the chest CT depending upon how they did it. I know that sounds stupid because the thymus is in the chest area but you'd have to ask the radiology dept. It sounds like the neuro doesn't want to be bothered with anything other than neuro stuff, which is typical. Save the general stuff for your primary doc. Maybe they can follow up on that.
Again, a neuro won't give a hoot about liver and kidney function! Not their area. A primary doc or a nephrologist should check all of that out again, compare the values and go from there. It's not that neuros don't care but it's not what they do!
ANA tests - especially if you were on Pred - can be normal. Pred's job is to get rid of signs of autoimmune diseases/responses.
B12 shots are usually only 1000 mcg of cyanocobalamin. That has to be processed by your LIVER into methylcobalamin before your body can use it. The rest is urinated out. They can also check your homocysteine and methylmalonic acid, which can be elevated with a deficiency. It's worth the test, especially given your liver function! My homocysteine was elevated during my B12 deficiency in 1999; methylmalonic wasn't done.
B12 is so important, for every cell in the body. And it's not only how much you get but about how much you USE. Classic supply and demand situation. The liver normally stores years of it. But there are those who cannot convert it to methylcobalamin so that the body can use it.
Any doctor can send labs anywhere!
What you might consider doing is simply showing all of the positive labs to your primary doctor and saying that you are not comfortable with ZERO followup. You can't exactly do without good liver or kidney function. Those things can be life threatening. My Dad had kidney failure, so I know a lot about that. You may not have "failure" but reduced function requires a diagnosis of WHY and the proper treatment plus a change in diet!
They have to figure out what is going on. The multiple system issues is what made me think lupus or hemochromatosis or something like that.
Don't let them drop the ball. The only way to avoid that is to do what I said before; employ the appropriate specialty docs to all do their part. Then have them send everything to your primary doctor.
I have to say that I'm concerned. If a doctor looks like a deer in some headlights, as it sounds your "hospitalists" did, they are way out of their league. It's not that they don't want to help but you have to realize that very few doctors are taught how to be creative problems solvers. They are more left brain than right and the best doctors involve both sides of the brains so they can be critical thinkers. Yeah, I'm a teacher as well as a designer/writer. Critical thinking/associative thinking makes everyone do their jobs better, not only doctors.
I hope you can pull all of this together and not wear yourself out!
Annie
I'm doing ok. Lots going on and I'm having a hard time in general. Thanks for asking.