Gosh, your doc is VERY CONSERVATIVE!

May 30, 2010 at 7:49 pm

Usually, docs will try a 3-5 day ‘loading dose’ and then do it monthly [with lots of blood tests to check your immune levels -every week to ten days?] and then decide how much and how often of which IVIG brand you need.
You have to get enough IG into you to FIGHT inflammation then taper off or up the dose to what you need to keep things from getting worse?
Some neuropathies can be a result of chemo? But from the little you’ve indicated, I’m just guessing that it’s not your case. In my case tho it mite have been the ‘hatching’ cancer that started the CIDP [along with a good pneumonia] long before the cancer was actually found -that IS the normal sequence of what they call ‘paraneoplastic neuropathy’. It was one of the few things I was NOT tested for during or after the CIDP testing.
All in all? The two issues CAN be connected? OR NOT. Once we’ve got both? It can’t be determined unless comprehensive testing for both is done at the same time…..and they usually don’t OCCUR at the same time.
No harm, no fowl. No difference in how we’re treated actually…?
But in your case? I’d ask your doc why you’re not getting the ivig more often and WHY? Maybe it’s an ‘afford’ aspect? or problems with your insurance-don’t know where you live and what your plan is….that can make a BIG difference!
Check out the e-zine [on-line magazine] at IG-Living and sign on…read the issues on line and save paper. It’ll widen your horizons about IVIG and how so many need it to LIVE normal or semi-normal lives. You won’t get any junk mail and if costs are a problem? Their staff can help you find resources! They won’t get back to you right away? But they DO get back to you and are very HELPFUL!
My heart goes out to you! Standing soo long? With the ‘duck-walk’ to boot? I’d last about 15 minutes! Can I say: OUCH! Hugs and hope!