I am a bit confused that any

April 6, 2008 at 12:06 pm

doc worth his oats would advocate a sural biopsy these days? The international association of pain and another association on autoimmune diseases both are reluctant to use it as a diagnostic procedure these days. In fact, many insurance companies [Blue Cross, Aetna and Kaiser] have policies written that indicate that ALL other testing must be done and only if ALL other testing is inconclusive might this biopsy be a valid diagnostic tool – primarily because of possible infection and other nerve complications. And now some key insurers no longer are willing to pay for the procedure without extensive justifications. That is due to the complications and expense of those complications.

I myself, refused the possibility of having it done both 4 and 3 years ago. I had essentially met the equivalent of 9 out of 10 criteria needed. Also, that bit of HOPE so important was that I didn’t want to lose function in a key part of me [ankles] to prove only what other tests have proven…dead nerves. I am glad I refused, as I mite, be getting a little ‘extra’ reflex and feeling there?

Recently I read of a newly developed ‘scan’ procedure at Rochester Inst. of Technology where they to a ‘Cat’ scan or the like which is very refined and they can ‘count’ the nerves and their status. I believe it’s going to go into clinical trials very soon – fast-tracked. It appears that pictures from X date can be compared to some on Y date to see either deterioration [and what kind] or improvements. Since it’s non-invasive, that would be great!
The only other option is ‘punch’ biopsies. These are usually used for small-fiber neuropathies and only a few places in the US are doing them now, and they are considered experimental as of this date. They aren’t truly meant for large fiber nerve issues tho. You can find some of the insurance policy ‘statements’ if you web up ‘CIDP+diagnostic+policies’ You will find various state insurances’ plans policies but for any big companies, they usually are the same give or take.

As for a ‘cure’? I don’t know, I feel extraordinarily grateful that I HAVE been diagnosed, and AM being treated far better than most folks with CIDP! I realize this is a CHRONIC medical condition/disease that can go either way from where I am – which is stable. I would like to think I see some minute improvements? But I am terrified of the progression possibilities. Like all here I make do with what I have the best I can. Dick? I admire you for even TRYING to apply for a clinical trial! That takes a lot of GUTS! The only thing that keeps me from trying is that word ‘placebo’! So, in my book your courage is far, far greater than mine.

So, back to original question – Ericc IF YOU feel that this is what you need to do to get where you think you need to be? Well, go for it. I gather that both you and your docs are a bit more than hesitant tho. Remember that while Ins. Co’s can ASK for a biopsy? Justifications in all other aspects by the docs CAN and does convince the ‘powers that be’ of a more common sense approach to therapies for treatments. Honestly, they just want us all to work for the expense of treatments!

So, keep up your hope and faith that things can work out. If you’ve a good bunch of docs? They’ve got staffers who often do nothing BUT this kind of stuff – getting you approved! Don’t give up!