My Introduction

[Guest guest]

Hello group:

I have been monitoring the group emails for a few days while mustering the

time and energy to introduce myself. I apologize for not doing so sooner and

also for writing such a long introduction. I have had a lot going on

medically over the past few months.

I am a 52 year old man and I work as a dispute resolution specialist and

financial planner. I discovered while doing research on CMT. I had been

told by a Doctor of Physical Medicine at Kaiser Permanente said he suspected

(based upon the results of a nerve conduction test along with other

indications) that I have a slowly progressing form of CMT. I had previously

been told

that I have chronic fatigue and fibromyalgia.

I have had a mild to moderate scoliosis since I my early teens but until CMT

was mentioned, no one had ever suggested any possible connection with with

my other symptoms (fatigue, muscle and joint aches, unusual sensations feeling

as if an electrical current were radiating along the nerves down my arms and

legs, sleep difficulties, etc...). Physical Medicine pointed out the

possible connection, and also noted that I have extraordinarily high arches (I

was

flat-footed when I was a child) and that this might also indicate CMT or

other neuropathy and resulting muscle contraction.

My first Neurologist referral at Kaiser,did not show much interest...his

eyes glazed over once he heard the word " fibromyalgia " and he pretty much

dismissed anything that Physical Medicine had told me (as well as the results

of my

first nerve conduction test). That test had indicated up to 50% impaired

nerve conductivity in my legs and feet. So I fired the Neurologist and set an

appointment with an new one. This examination was delayed however because

of another, apparently unrelated, medical problem I encountered.

My most recent news is that CMT is still suspected even though the genetic

test for the most common form of CMT came back negative. My new Neurologist

has taken a very thorough history and conducted a more complete physical exam.

He believes that a quite plausible case can be made for my having a mild

and slowly progressing variant of CMT and I am currently awaiting a date with

him for a new nerve conduction test.

Because I was complaining about intermittent numbness and tingling in my

toes along with tripping and falling due to weakness in my right foot, the

Physical Medicine Doctor scheduled me for an MRI to check for pinched nerves in

my

lower spine. This MRI taken on a Saturday night in mid-December saved my

life because, while it revealed nothing in the way of pinched nerves, it

uncovered an unknown (and asymptomatic) mass on my left kidney. On the Monday

following the scan I was informed about the mass and was scheduled for an app

ointment with the head of the Department of Urology two days later. At that

time

I was given the size of the mass, better than even odds that this was a

malignant tumor, and the news that I would lose the kidney. Surgery was

scheduled on a fast track.

The nephrectomy took place on January 17, at which time the odds of

malignancy were increased to 95%. The tumor had developed adhesions all over

my

diaphragm, so it also appeared that it was not " contained. " I spent the next

four days believing that I had an untreatable cancer which had spread beyond

the

kidney. So, I felt most fortunate when the pathology report came in with

the finding that my tumor was a benign Angiomyolipoma and that I had beaten the

odds after all.

Now I can focus again on issues of neuropathy and CMT. I am looking forward

to learning from the group all that I can about CMT, including other tests

that may be available beyond the one genetic test that turned out negative.

Ken