Re: G's normal EMG/NCV's and other tests

[Guest guest]

Hi Helen,

Yes, my last EMG/NCV, which was my baseline Adult reading (done in

1999 - with protest by me) showed all normal readings (there is a

range of 'normal') But, remember that this testing showed that I also

have 'reinnervation'. (Meaning nerves have rewired themselves) Normal

EMG/NCV tests with reinnervation are indicative of CMT Type 2)

My original CMT diagnosis, made in 1962 (prior to many horrible

tests) was made simply and yet clinically. Over several visits to an

orthopedist (there weren't 'neurologists' yet as we know them) my

orthopedist examined my feet and had me walk up and down the halls of

his office, with and without shoes, stand up on toes, walk, stand on

heels and walk, plus the 'pin-pricking' on the bottom of my feet and

a few other more manual type tests. He also examined several pairs of

shoes I had, for school, for play, for church. He could tell by the

way I walked and how my feet were rolling that this presented such as

CMT.

Prior to this, about age 7, I was falling alot on the playground

playing dodgeball, and also having problems on Campfire Girl hikes

with being able to hike long - and always falling in the creeks when

we had to cross (what I was doing was purposely falling in to cool

off my burning feet!) At this time, a different orthopedist forced

me to wear 'toe braces' (meant to keep toes straight at night). Those

immediately came off as soon as my parents kissed me goodnight and

turned off my light.

Once in my teens, doctors re-thought CMT and began testing me for

everything under the sun. This went on well into my 20's, until I

finally spoke up for myself and said 'no more'!

I had a muscle/nerve biospy at age 14, followed by my first (and

unsuccessful attempt at the torture of an EMG/NCV at UCLA), followed

by another EMG/NCV by a private doc when I was 15, followed later

with a spinal tap and a brain/electrode test (I think a forerunner to

the MRI) I was diagnosed and rediagnosed with so much, MD, MS,

's, FA, ad nauseum. Tests for all those, however proved 100%

wrong.

In my 30's, while living in Cheyenne, I met a wonderful neurologist

who monitored me (had some strange effects from adjusting to life at

a high altitude) and he again diagnosed me with CMT, from observance

of feet and surgery scars, walking, and manual tests. Fortunately he

felt an EMG/NCV was not necessary at that time (I recounted my early

horrors, etc). He did more for me than anyone. Did not pump me full

of pills or PT or other 'therapies', he also suggested that my CMT

was so mild that it may or may not progress, backing up the original

diagnosis from 1962.

Helen, CMT affects us all differently - people in the same family are

even affected differently. Also, CMT is a 'syndrome', not a concrete

disorder with concrete onset/patterns/outcome, etc. You bet there is

quite a 'range' of effectation!

I chose to live a positive, success-driven life at an early age, and

also followed my original surgeon's advice on swimming, biking, and

walking in sand to strengthen foot muscles. As you know I work out 6

days a week now, at age 54, so I am still doing this advice.

Changing eating styles and patterns, as well as nutrition has also

benefitted my greatly. I also believe that my childhood foot surgery

was beneficial, as was physical therapy and potassium supplementation

during my teens.

If you wish to read about reinnervation in CMT, there is a good

section on it in Paolo Vinci's book " Rehabilitation Management of

CMT " . I think the AICMT still has copies, you can go to their website

and contact them http://aicmt.org

~ Gretchen

[Guest guest]

Thank you for that information, Gretchen. I think your last doc

sounds like my first (and current!) one. When you get down to it, it

matters little what name or label is applied to the symptoms. With

CMT, it doesn't even seem to matter what subtype it is because there

is so much variation within each subtype. What's important is finding

ways to manage the condition. This is basically the way he (my doc)

talks about it with me. I'm the first person in my family to bother

with genetic tests, but it is clear to us all that we have CMT.

I guess the reason I asked you is that I've been frequenting both the

CMT and CIDP boards, and sometimes I wonder if people are getting the

right diagnosis. For instance, when someone on the CIDP board laments

that a popular treatment isn't working for them, I wonder if they

actually have a second hereditary/genetic condition (like me).

Conversely, I would wonder about someone with CMT who's symptoms

disappeared over time, as that would seem indicative of an

inflammatory condition more than an inherited one. With a genetic

condition, if your body cannot produce an enzyme because of a genetic

sequencing error, or has a gene duplication, then that's not going to

get better. But then again, sometimes genetic conditions take decades

to manifest themselves. See how confused I am? lol

Helen