I often am?
Let me be sure I've got this right....You have both something auto-immune and somethings resulting from TBI?
Well, each alone is enough to make a person scream in frustration for sure but both aren't fun when combined! You also seem to be a ping-pong ball between all medical factions too. I would sit down or talk long and hard w/the one doc you trust most and see if you can herd all these professionals onto some sort of co-ordinated page [an exercise in frustration, but IF doc A knows doc B {w/a bigger reputation} is 'watching,] you mite get better considerations. Also find an 'patient advocate' who can help you coordinate things at that hospital you seem to visit too often. Especially the KEY docs to be alerted that you are THERE again!?
How did a second neuro get to do the sural biopsy w/o the first neuro's approval? Wowsers that is stepping on toes and YOU need to get these two docs talking pronto! Many neuros [like that second one] often won't believe a CIDP diagnosis w/o that biopsy. Depends on how and where they got their neruo training..
Here is one set of insurance company's rules about IVIG:
http://www.aetna.com/cpb/medical/data/200_299/0206.html
I believe there are some stickies from a european medical assn that outline the diagnostics and all far better tho...
When does IVIG start to kick in? Well, for each of us is different and for some folks it can take 3-6 months for it to kick in. Variables depend on your immune #'s and your doses as well. It should be the prescribing neuro who has to do the 'insurance battles' for you now. Find out the staffers' names and just call them and say Thanks for helping me! now and then... Honey can go far...
The Sensory/Motor neuropathies and possible brain function issues all come into play in terms of your falling. This is a very serious issue. Don't go anywhere w/o canes/walker or in a wheelchair! As much as you would like to skip that aspect, falling is the worse option, isn't it?
If you've an immune neuropathy, your internal thermostat IS likely broken...those small fibres are the ones that get the rest of the vascular and lymph systems working to keep things warm/cool. I too have a sub-normal temp on average..when it's normal? I'm sick! You aren't crazy.
You have soo much going on! Don't give up...you've little choice but to keep on slogging. Who knows? YOu just mite get lucky with the next doc visit or test! I sure hope so!!
's - j