I think (because his mom had Guillian Barre), that Alan indeed does have CIDP. But he doesn't have it as bad as others we met (at the Neuropathy meeting). They had to use walkers because of balance problems.

Alan never (to my knowledge) ever had balance problems. but when the neuro examined him, she said "oh your balance is getting better". I never knew he had any balance problems. You know what I mean, when they make you walk on your heels, and walk on your toes across the room, and stand on one foot. Well, before the IVIG, Alan couldn't do this these things (as well as the neuro would have liked, I imagine). But his last neuro visit, she said "oh, your balance is much improved, we are going to change the ivig from two days a month to one day a month".

He has his next neuro meeting in October.

So I gather the IVIG (while it has nothing to do with improving his pain), it's improving his balance.

And thank god, he's walking again. Without the shoe boot thing. You should see the area of his ulcer. It's beginning to look like he never had the ulcer there. And he had that stupid thing for 18 months.

Thank god for the guy at Methodist Hospital and thank god for his sample of regranex.

Mel

My understanding, which is pretty much yours and Silverlady's, is that the sural nerve biopsy would reveal the aspects of the disease that make up CIDP, which is primarily a clinical diagnosis. That is, it would reveal that the neuropathy is primarily demyelinating--usually, that is revealed through examining the remaining myelin for damage from immune complexes and cell infiltrates, resulting in inflammation (and, of course, finding a lack of myelin, or damaged myelin, is also a big tip off)--and for evidence of a relapsing/remitting pattern, meaning attempts at remyelination (this often leads a characteristic myelin pattern known as "onion bulbing" around the cells).

On the other hand, the sural nerve biopsy itself is not likely to reveal the original cause of the CIDP, just the syndrome/process. Specific antibodies are unlikely to be identified this way (and are just as likely to show up in blood testing--which is to say, not often).

A sural nerve biopsy has much higher yield in autoimmune neuropathies that are primarily axonal in nature. This are more likely to be asymmetric and to have vasculitic components--often, these involve variants of the anti-nuclear antibody.

A sural nerve biopsy wouldn't seem indicated for Alan, as it wouldn't alter his treatment. And yes, while there are some who've had sural nerve biopsies and come through with no permanent damage, it's a tricky procedure, best performed by a well-trained surgeon--there are plenty of people who've experienced permanent pain or numbness in the area afterwards.

See:

http://www.neuro.wustl.edu/neuromusc...mdem.html#cidp

http://www.neuro.wustl.edu/neuromusc...dy/pnimax.html

And the section Silverlady listed from this site is also a good explanation of the circumstances under which a nerve biopsy would be indicated.

Ah, my dear Glenntaj:

I do love the way you talk. lol

And thanks everybody (Rose, Billye) for all the info on the Sural Nerve biopsy.

I shall print it out and show Alan. If he still wants to get one, he'll have to do it in the middle of the night without me. And that aint about to happen.

Thanks much

Mel

All this good info...I heard somewhere that the sural nerve biopsy was outdated but for what reason I have no idea....no help here. NOW i am confused....I specifically asked if I was getting "small fiber biopsy" is that different from "punch biopsy"? I can't remember which doctor told me it would be the small fiber one but is that the same thing????? I had the EMG and NCS and the were normal of course. Negative for Myathanis gravis. So what about this arm fatigue. Darn it. I don't really notice much pain till I go to bed. My feet have been burning and nasty feeling for years, but has not spread and they say it is not "neuropathy". I always seem to have too many sx for anyone to handle. Well I can't either but I want to try to figure it out. Darn, I have insurance, are docs just giving up ???????? Today my left hand was tingling then my thumb started twithching for a few minutes .....now what. I had a bad pain attack in left arm last fall all the way from first 3 fingers to side of head, said its not TOS< no answer on that either. My right hand is in a splint so I think the overuse of left is causing pain and sx from the original thing that happened whatever it was. Pain lasted a few weeks then finally subsided...flared up if slept on but now kiinda gone except the hand pain now....and the tingles today...

The skin punch you are getting is a small fibre biopsy from the surface of the skin, the sural nerve biopsy is more invasive, this site should help you.
http://www.hopkinsmedicine.org/media...europathy.html

Lailavia,
Has anyone done an MRI or any other work up on your neck, the cervical part of your spine? Some of the symptoms you are describing can be caused by problems in your cervical spine. Even the feet can be affected by this.

Here's a site with some basic info that might help you understand. http://www.spine-surgery.com/53_259_...4331434435.htm

Billye

I had a sural nerve biopsy done. It is not a lot of fun, but my foot is fine now, except is it somewhat numb on the side.

I would avoid having one if you can, especially if you are having foot problems involving healing...

Cathie