Isn't the skin (punch) biopsy for small nerves? That is what he said and what I thought from reading on it....he said the people there are good at reading the results....yes, Dahlek, he did order the two tests (put that he is questioning the POTS! ) and also commented that he doubted anything wrong with me. Maybe he snuck in thru a side door! I mean I just can't beleive how I have to try to justify myself. and by the way i do have more symptoms now, I am afraid to even bring it up ...they are squashing me. Don't worry after a few days I will have my will back. I'lll either get thrown out on the street or into the pysch ward if this keeps up! Me and hubs both noticed that he seemed rather depressed and unhappy that day.....maybe HE is being evaluated....or is it true they get more money to do less tests??? Or is that just in the HMOs....I need to see the movie SICKO.

lailavia, the skin punch biopsy will not show them the cause of your problem, it will only show them the nerve density [how much fibre damage] but you have been telling this all along with your symptoms, you previously mentioned that you had " some loss of temperature sensation " your small fibre's job is to send the correct temperature signals to your brain, when they are damaged they don't send the correct signals, they send like scrambled or confused messages,

This solely my opinion only, but i think that if the nerve's are already damaged and are struggling to send proper signals to the brain, so why go cutting them around when they are showing damage already, may be possibly good for comparison reasons over time but then you know if your getting better or worse anyway, just doesn't make to much sense to me.

I am sure you won't get thrown into a physc ward , you cracked me up when i read that, don't worry i had some real idiots first up, once a neuro who had just done a nerve conduction test on me actually said to me " i don't think your got burning feet " the NC test's says so, mind you, whilst i am sitting there with my feet were on fire , i won't say what i said but he took off pretty quick , a nerve conduction tests doesn't test for small nerves only large one's, just shows you how SOME neuro's can be completely useless when it comes to PN.
good luck anyway,
Brian

First, it is a fairly uninvasive and quick procedure--a few shots of topical pain killer (Lidocaine of Xylocane), some 3mm diameter/1mm thickness skin punches, and a few band aids finishes you up.

Second, as much of the preliminary work on standardizing the procedure and interpreting the results was done at Hopkins, it's one of the best places to get the test interpreted. The pathologists will be looking at your intraepidermal nerve density and the fiber condition, as Brian says, and comparing that to "normals" with no symptoms. It's unlikely that it will show a cause for all this, but it can document that damage to small fiber axons is occurring or has occurred.

I had this test done at Cornell Weill, and it was the first test that unequivocally showed ANYTHING. Before that, I'd had MRI's, CT scan, X-rays, evoked potential testing, spinal tap, NCV/EMG, EEG, blood and urine tests up the wazoo--and not a one of those showed anything abnormal. (That often happens with small-fiber syndromes.) And, of course, since all those other tests were "normal", the doctors were starting to doubt me and looking at me in that "psychiatric" way. I KNEW I was feeling body-wide burning pain and I KNEW something was wrong that has nothing to do with my mood (which was getting incresaingly ****** by then). I was fortunate that at Cornell Weill the neuropathy experts were familiar with the possibilty that the skin biopsy confirmed.

The other day Alan said to me "how do they know I have CIDP?" I said "well, they found protein in your spinal fluid and that means there is something autoimmune going on". I'm correct, right??

Then he said 'well, what would a Sural Nerve Biopsy find out?" And I responded "well, it would definitely conclude that you either have CIDP or you don't have CIDP". You see, I asked his neuro this question and she said "you don't want a Sural Nerve Biopsy but that's the only way to conclude for sure if a person has CIDP, and the treatment is the same anyway, IVIG, which he is now getting'.


So here's my question. Is there any reason why he should or should not get a Sural Biopsy. And if he gets it, what exactly can they find out?? Can it say "yes indeed, he has CIDP", or can it say "No, he doesn't have CIDP, but he does have ..........?"

Thanks for any info you can give me. He really wants to know FOR SURE why he has the pain between his toes.

Mel

Melody,
You don't want Alan to have a sural nerve biopsy, in my opinion. When I was at Mayo, the idea of a sural nerve biopsy was brought up and I was told that they would not do one unless it was absolutely necessary. The words of the neuro were "You realllllllly don't want to do that unless it is absolutely necessary!" Sometimes the pain connected with the sural nerve biopsy never goes away and you really don't want Alan to have more pain.

He is already getting IVIG, and I'm not sure what more they could do for him.

Billye

Billye:

I understand completely. His neuro also said "you don't want him to get a Sural Nerve Biopsy". I never asked that he get one. I just wanted to know what exactly a Sural Nerve Biopsy will tell us.

Will it say "yes you have CIDP" or will it say "no, you have something else".

That's the only thing I am curious (and he really wants to know this). He doesn't see his neuro that often, and he is not one to ask questions, so he said: "ask the people on the boards exactly what a Sural Nerve Biopsy will reveal in my case". So I said "sure, no problem".

As a matter of fact, when we went to the Neuropathy meeting, the moderator of that meeting actually told Alan "there is no reason why you shouldn't have a sural nerve biopsy, I had one 20 years ago, and it was no big deal". I think that's why Alan wants to find out what all the fuss is.

And I agree completely, he doesn't need any more pain in his life. I mean, who does????

Mel

Because it was no big deal for that person does not mean it will be no big deal for Alan.

Too many routinely want to do a sural biopsy and anything else that might show what the damage is, while doing nothing to find the cause of the damage, which in many cases could be stopped. How smart is that?

The sural nerve biopsy should only be done in a small percentage of cases when there is good reason to do it. Others who have read about it more recently (it's been years since I read about it) might speak to those.

rose

So from what you wrote, (and I'm a clueless dork here), a sural nerve biopsy will only confirm that either Alan has CIDP, or that he does not have CIDP. And if he does not have CIDP, a Sural Nerve Biopsy won't tell Alan exactly what caused his neuropathy. Am I correct??

If this is the case, even I wouldn't go through with this biopsy thing. I heard too many nasty things about it. I mean, if it were the case that a person could get a Sural Biopsy and bam, a conclusion would definitely be drawn and the doctor would go 'okay, NOW WE KNOW WHY YOU HAVE NEUROPATHY, then that's a completely different thing. But from what I understand, all it does it tell you that you have CIDP.

Did I get this right? And don't worry, he's not going for this procedure while he's married to me. Unless he does it in the dead of night. lol

Melody

Melody,
I'm hoping Glenn will jump in on this one. But as I understand it, a sural nerve biopsy will show whether or not Alan has CIDP. Here is a link: http://www.neuro.wustl.edu/NEUROMUSC...her/bx.html#dx Please anyone jump in and tell me if I'm reading this wrong.

But, whether or not he has it, I'd still not want to chance it, because finding out in this manner or not, would not change the treatment of it.

Billye

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