Thank you greatly Kitt.

The only problem with getting treatment is that it isn't FDA approved. (IVIG)
So you need a diagnosis, which is where the nerve biopsy would step in.

And I'm leaning towards not getting it done.

Hi - Fran here again - I get IVIG here in Canada even though I don't have a diagnosis. I go once a month for a full day (6 hours). I am not sure it helps as I continue to deteriorate slowly but I like to think things would be worse if I didn't get it!!! The cost is astronomical so I am very lucky to not have to pay or worry about insurance etc. I know this doesn't help you however.....

I have a pretty good insurance, but its through the state, and they would probably need a reason for it.

But I found out on the CIDP forums that they changed the diagnostic criteria for CIDP.
So, I need to figure out what it is now and if I can be diagnosed based on what I already have?

I tried searching it on google, but came up empty handed.

I called my neuro's office today to tell them I didn't want the nerve biopsy and ask what my other options were, and they said I may not need it anyway. *shrugs*

So I don't know what was evident on my EMG.

I requested the dictation, but it wasn't available.. they said to call again tomorrow.

Very interesting as to what you have found out.

WOW! finally caught up on all the posts here! LOL

Fran *waving* another Canadian here thanks for the inside info on the biopsy. I'm really on the fence about this *sigh*. I still have to go back and look at the links that Kitt provided.

Diag....no I have not had a spinal. I can't seem to get anywhere here with my docs. *sigh* again.

Kitt...yes it is a really long time. I was told our lab is the slowest in the country luck me!

Can't wait to hear/read what your report says Diag. will be watchin for it.

Hi lynxygal, I know that I would never, ever have a nerve biopsy. A skin biopsy is much less invasive. Of course I don't need that either. Dr. Michael Shy from Wayne State University is an expert on CMT and research. He said that a nerve biopsy is not what is done. It would be a skin biopsy if needed.

I would never have a spinal tap either (epidural) because you can have greatly enlarged nerves which are called onion bulbs. The anesthesiologist has to be very aware of the fact that you have CMT and what that really means. They are not exactly a breeze either for some in the general population. Case in point - a gal (non-CMTer) in town had had one when she had a knee replacement. All went fine. The next time when she had the other knee replacement, same anesthesiologist, they almost lost her. So a person never knows.

My friend's daughter had a nerve biopsy because the doctor wanted it. This is a few years ago. It really was for the doctor's benefit. My friend told her not to do it but she did and she has been sorry that she had it done ever since.

Please keep us posted as to the results you find out. Thank you.