Re: nerve biopsy to help with diagnosis

[Guest guest]

Hi folks,

I had this procedure done years ago and the biopsy sample was sent to the

Mayo Clinic in MN for investigation. The report came back: " nonspecific

segmented demyelination " . In other words, yeah, you have something wrong but we

haven't a clue what. Gee.....thanks for the pain, loss of sensation in my foot

and the " blowtorch " burning sensation from the procedure that I now

endure...................glad to know you haven't a clue after all that!

I don't suggest you have it done, either.

Bob in Indy

[Guest guest]

I totally disagree with the comments made about the nerve biopsy. If one is

being recommended, its because your doctor needs it to diagnose your

illness, or to eliminate the possibility of other diseases. I had a muscle

and nerve biopsy done in August of last year at the Mayo Clinic as a last

resort. I spent 6 days there and underwent every possible neurological test

imaginable. I had the neurologists so baffled, there was simply no other

choice but.to perform the nerve and muscle biopsies to diagnose me. I, too

have a slight burning sensation and loss of feeling where the nerve was

removed. HOWEVER, I KNEW THAT GOING INTO THE PROCEDURE. The risks and

advantages were spelled out for me before the procedure. To blame the

doctors for the side-effects is simply not fair. Doctors don't have all the

answers and I'm sure they wouldn't want to cause you unnecessary discomfort

or pain. But I am sure they want to help. I went into this with my eyes wide

open, and I'm glad I did. As it turns out, my nerve biopsy was completely

normal, but my muscle biopsy was not. This eliminated " CMT " as a

diagnosis, and confirmed my diagnosis of " Distal Predominant Motor

Neuronopathy " , a disease of the motor neuron most closely related to " ALS " .

I now know what I'm really dealing with and can manage my disease

accordingly. Even though I don't have CMT, when I joined this group early

last year, I thought I did. Many of the symptoms are the same, and

therefore I still can learn from participating in this group and maybe even

help others. I highly doubt that your doctors wouldn't learn something from

performing the biopsy, but in case they don't, you know you've left every

stone unturned in looking for answers.

[Guest guest]

In a message dated 7/5/2003 8:29:23 PM Central Daylight Time,

tigerboy@... writes:

> I, too

> have a slight burning sensation and loss of feeling where the nerve was

> removed. HOWEVER, I KNEW THAT GOING INTO THE PROCEDURE. The risks and

> advantages were spelled out for me before the procedure. To blame the

> doctors for the side-effects is simply not fair.

OK......first off....don't yell. Second, I did not say I have a " slight

burning sensation " . My pain, as I plainly stated, feels like a blowtorch on my

foot. Painful enough to make me ( a 6 foot 3 inch, 247 pound man) cry out in

pain. Count your blessings. Thirdly, *always* question your doctor and never

assume he knows what he is doing. Fact is, most specialists don't know squat

about CMT. I trusted my specialist and had the nerve biopsy done. I knew that

I would lose feeling in that foot. No one said anything about severe burning

for the rest of my life! All I needed was a simple, painless blood test to

determine if I had CMT..........not a nerve biopsy.

[Guest guest]

, Thanks for the info, they wanted to give me a nerve biopsy at one

time but I never went through with it because I was a little scared. Now I

know I won't!!!!!

ka

[Guest guest]

Bob, Thanks for the info, I'm really nervous about going to my mda app. and

when I was there last they had brought up the nerve biopsy. After reading

all of your posts I know that I will refuse it. Thanks again!!!!

ka

[Guest guest]

My sister has been going to the MDA Clinic here for at least 16 yrs and we

have never heard of them wanting a nerve bio.

Elaine

[Guest guest]

ka,

Just to clear the air a bit, when I had my nerve biopsy done, I was

given a local anesthetic, and told that I would no longer feel the top

of my foot normally (I feel pressure, like when your foot's asleep...)

My main gripe is that they told me it was " no big deal " and that " I

could go back to work the same day " (I worked on my feet all day at the

grocery store at the time...) They also said that this would definitely

tell them if it was CMT. If they had told me the truth, and let me

decide I would not be bitter about it. It hurts, and so do the

conductivity tests! (ever stick your finger in a light-socket?) At least

my biopsy site doesn't have the blowtorch effect!! The original incision

was less than 1/2 " but the scar is 2 " long, and it is sensitive still,

after about 15 years. Like I said: Your Mileage May Vary...

For me, I lost time from work, and got the " inconclusive " test results,

which amounts to: we're so smart we're actually incapable of being

wrong, but even we make mistakes. All of this was before the blood

test(s) that are out now.

Anyway, I'm glad to see that once again, I'm not alone- I feel like a

lab rat (let's try cutting out a nerve and shocking him!!). That said, I

would take the blood test, and skip the biopsy. By the way, I still

don't know what flavor of CMT I have.

[Guest guest]

I will have a biopsy done only if I have to for a CMT treatment. Other then

that NOOO NOT ME!

[Guest guest]

ka,

I hope I am not honing in on a conversation. I had a nerve biopsy done

20 years ago, and it wasn't that bad that I remember. I had loss of

sensation in my heel for a few years after, but it wasn't much less

than what I had prior to the biopsy. It was also a means of diagnosis

for me at the time. I had lived with this disease my whole life and

was anxious to find out what it was.

Anyway, that's just my two cents worth.

Barb )