spinal tap

[Guest guest]

,

I had a spinal tap when I was 20. That was 1972. The DNA CMT genetic

testing wasn't available then. Also, even though I was first

diagnosed with CMT when I was 10, as I got older and saw new doctors,

I had more tests - to check for other possible diagnoses.

In 1972 I spent 4 days in UCLA's hospital having all known neurological tests

for all kinds of neuromuscular disorders. In the spinal tap, the

doctors were looking for the possibility of MS. But, in that test,

and the rest, all my results came out " normal " .

Yes, for me, at that time, the spinal tap was barbarous. The needle

was huge, I hated lying in that position, and it hurt like he**. The

doctors and nurses told me to quit crying and swearing during the

test - that's how bad it was. Lying flat for the next 24 hours was also a

bummer.

I will NEVER have another tap. NEVER. I will (only reluctantly) have

another EMG/NCV before a tap anyday.

Just sharing a bit of my own " remembrance angst " lol

I too am wondering why so many have had a spinal tap - I have never

heard of this to actually diagnose CMT - but it CAN rule out other

neurological disorders if there is a questionable diagnosis. Also, something to

remember, for most of CMT Type 2 and its mutations, there aren't any

DNA genetic tests yet.

Gretchen

[Guest guest]

Hi all,

We just got Ben's DNA results in and it said the test show everything to be

normal. Which only means that as of 2004 he doesn't have any of the CMT that

have been researched..just when I think after all of these years of frustration

dealing with dr. after dr. and every test coming back normal and then finally a

Dr. diagnose CMT only to be told this..no one has mentioned anything about a

spinal tap. but we met with the Dr.again in April and she said we will talk

about this more and go from there..He has been wearing his AFOs all day during

school last week and says they feel pretty good so that is one good thing!!

Everyone here is so awesome and I have learned so much that we just wanted to

say

THANKS!! :-)

(iowa)

[Guest guest]

SORRY TO HEAR HOW PAINFUL IT WAS FOR YOU. I haven't had a problem with mine.

I guess my tech much be doing someting right. Like not hitting bone and just

obtaining fluid. I was told that's where the pain comes from during

procedure. After reading all these postings I sure as heck will not change

technicians. The guy is awesome and never any pain.

Elaine

[Guest guest]

I had the same experience because he was hitting a ultra sensitive spot...once

he went between two different vertabra I barely felt it. If any one else

experiences that pain, tell the doctor to change to different vertabra.

Carl

[Guest guest]

Hello to all:

I also had a spinal tap when I was originally diagnosed with CMT 1. Mine was

painful too. They did it about 20 minutes after completing the EMG. I was

so tensed up from the EMG and my back went into spasms during it..oh what fun!!

I was fortunate not to have had the headache afterwards. I swore I

will never to through another EMG...if possible.

Crock

[Guest guest]

I had to have a spinal tap when I was diagnosed and a muscle biopsy along with

the needle nerve test, but that was about 25 years ago and we had no idea what I

had. No-one else in my family ever had anything like CMT, so they had to rule

out everything.

LaDonna

[Guest guest]

Yes, I had a spinal tap at Mayo Clinic as part of a series of many tests over a

6 day visit. My understanding was that they were looking for a high level of a

specific kind of protein in the spinal fluid. If the protein had been present,

there would have been a treatment for it. When doctors are trying to make a

diagnosis, whether it be CMT or something else, it is somewhat of a process of

elimination. A spinal tap is just one of the tests that they may use. A spinal

tap is really no big deal; and your brother shouldn't be afraid of it.

K.