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diagnosing CMT/EMG/NCV scores

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ka,

I know how frustrating this must be for you. I am unable to answer your

question specifically, as I am not an electrodiagnostic doctor, nor am I

medically trained whatsoever. This site has the many subtypes and if you

spend some time with each one, maybe something will strike you.

http://www.neuro.wustl.edu/neuromuscular/time/hmsn.html

I really want to encourage you to maintain open communication with your

doctor/s and if you are still unsatisfied, start to seek out some of

the genetic tests being developed for Type 2. Some types of CMT

Type 2 can be diagnosed from the DNA test - i.e., 2E, possibly F

and G by this time.

There are also researchers working on new test developments as I

write and I can give you a contact if you need this. You will need

to present negative findings in both CMT 1A and 1B. Keep in mind

that research has discovered genes are jumping chromosomes and new

CMT mutations are still being discovered.

You might also be interested in the Electrodiagnostic home page

http://www.teleemg.com/

Bearing in mind that I do not know my specific " type " I will share my

most EMG/NCV with you, as this is my most recent personal experience.

The doctor who conducted this test is Campion, MD. His

diagnosis/thoughts are included. I was 47 when this last test was done.

He writes in his electrodiagnostic report 6/16/99: Using a monopolar

needle, the following muscles were examined in both lower extremetities:

gluteus medius, gluteus maximus, abductors, hamstringss, ilio-psoas,

quadracepts, tibilalis anterior, peronei, extensor hallucis longus,

tibialis posterior, extensor digitorium brevis, abductor hallucis, and

medical and lateral gastroc. In addition, muscles in the right arm,

forearm and hand were examined.

RESULTS: Irritability was entirely normal and no fibrilliations or

positive sharp waves were observed. In the anterior compartment muscles,

although there was no obvivous decrease in the number of units firing,

virtually every unit was long, large and polyphasic, indicating

reinnervation. Similiar changes were seen in the intrinsic muscles of

the feet and in the intrinsic muscles of the hand. More proximally,

motor units were entirely normal in frequency, amplitude, configuration

and duration. There were no fasciculations or abnormal discharges.

NERVE CONDUCTIONS:

Right Median Nerve

Motor distal latency at 8cm 3.7 msec (normal is 4.6 msec or less)

Conduction velocity 59.2 M/sec (normal is 49.0 M/sec or more)

Sensory distal latency 3.3 msec (normal is 3.7 msec or less

Right Ulnar Nerve

Motor distal latency at 8 cm 3.1 msec (normal 4.0 msec or less)

Conduction velocity 65.0 M/Sec (normal 49.0 M/sec or more

Sensory distal latency at 13cm 2.4 msec (normal 3.5 msec or less)

Right Peroneal Nerve

Motor distal latency 4.8 msec (normal 7.0 msec or less)

Conduction velocity 61.2 M/sec (normal 41.0 M/sec or more)

The amplitude of the response was near-normal and the shape was normal.

Right Sural Nerve

Sensory distal latency at 14 cm 3.6 msec (normal 4.2 msec. or less)

COMMENT: The patient clearly does not have a demyelinating or more

common form of Charcot Marie Tooth, in which slowed conduction and

frequent absent sensory potentials are observed. Moreover, the patient

did not show atropy of the feet and hands seen in Charcot Marie Tooth.

With extensive reinnervation in the anterior compartment muscles, it is

possible that she has a neuronal form of Charcot Marie Tooth. A

moderately high percentage of these patients also has some central

effect, such as is obvious in this patient.

So, ka, that's my latest EMG/NCV report - my own 'type' still

unknown to me. As for my original diagnosis, as a child, an orthopedist

watched me walk up and down his halls, and without too much fuss, poking

or hurting, and no family history, he concluded I have CMT. (circa 1961

or 1962 - neurology as a medical speciality was in its infancy)

In my teens, 5 or 6 years later, I had much more testing and even into

my 20's. I must have had every test there was - guess it was done sort

of backwards - but all the other tests I had (invasive mostly) simply

showed that I did not have MS, MD, Lupus, CP, bla bla bla. At age 34/35

I had a simple blood test for 's disease - also negative. Even

last year (I was 49 at the time) my internist wanted to test me for

Rheumatoid Arthritis, that too comes back negative.

My spin on all of this? Goodbye tests, hello old friend, my CMT.

~ Gretchen

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