new members

[Guest guest]

Welcom to all the new members!

To - you're a talented writer!!!

I felt the same way about the lack of publicity about CMT when I was finally

diagnosed at age 42.  Throughout my life, I had experienced a multitude of

'orthopedic' issues, had absent reflexes from birth, and deformed feet -

which 'ran in the family', yet no doctor figured it out.  Ironically, my

total

hip replacement at the age of 38 was performed at a medical center which was

the

MDA hub in my county, yet they still didn't put the pieces together.  It wasn't

until a few years later when an astute physical therapist figured out my

father

had CMT and referred him to a neurologist that this mystery was finally solved

for my family.

I was frustrated that the diagnosis had been missed for all those years, through

multiple generations.  I was also frustrated that I hadn't heard of the disease

myself.  Since I was a kid, I had participated in fundraisers for other

diseases, such as MS, but why had I never heard of this disease?  I think the

answer is complicated.  I'd be happy to share my observations with you

offline

if you're interested, but as part of the solution, I can't help but wonder if

your special talent may be called upon by someone someday! 

________________________________

From: " malamutesaloon@... " <malamutesaloon@...>

Sent: Thu, July 29, 2010 5:45:19 AM

Subject: Re: New Members

 

Sorry--as a new member I've been just kind of lurking here, just seeing

what this group was about. I guess it's now time to jump into the fray, as

it were.

My name is . I'll be 67 on Nov. 4. As a native Santa Barbaran, I see

no need for change, and have lived in the same ZIP-code area my entire

life, and have had the same phone number since 1968.

I was a reporter/editor/columnist for the Santa Barbara News-Press for

over 25 years.

About 8 or 9 years ago, I noticed that my fingers were getting numb after

I'd been typing for long stretches. The numbness would eventually go away.

And then one day it didn't.

I made an appointment with a neurologist, who did EMG studies of my hands.

He also wanted to do studies of my feet.

" Why? " I asked him. " I don't have any problems with my feet. "

Imagine my surprise to learn that I had virtually NO feeling or reflexes

at all in my feet! True, there had been that time a few years previously

when I'd been walking barefoot on my hardwood floor and heard a " click click "

sound, only to discover that I'd stepped on a thumbtack and not felt it,

but I never gave that a second thought.

One day in September 2007, something bad happened.

My left foot began to swell and change color. It was spectacular. I went

to my family practitioner, who referred me to a podiatrist. I was admitted

to a hospital that day. Turns out that I had somehow cut the bottom of my

foot and didn't know about it, since of course I couldn't feel anything,

and who ever looks at the bottom of their feet? Infection had set in with a

vengeance. I was in near septic shock.

Half of my left foot wound up being amputated. Yikes! This was my

" clutch foot " --would I ever be able to drive my classic stick-shift right-hand

drive 1967 Volkswagen--or my motorcycle--again?

While in the hospital, virtually all my lab values were through the

ceiling, including my blood sugar. I was erroneously diagnosed with diabetes

type II, even though my hemoglobin A1C both prior to and after the infection

was at or below 6. All the other blood panels have subsequently returned to

normal levels as well.

Meanwhile, my neurologist was testing me for everything from heavy metal

exposure to multiple sclerosis, all with negative results.

Allow me at this time to introduce my son, .

turned 37 on June 4 of this year. He's an M.D., and is a

psychiatrist. He's got credentials. Recognizing that he had some of my symptoms

(neuropathy, absence of reflexes in the lower extremities), he went through

extensive testing, up to and including the chromosomal testing that costs

megabucks. The result?

has CMT!

Imagine that!

And since one inherits CMT from a parent--and since 's mom has no

symptoms and I have ALL of them--guess who he got it from?

Yay!

--who, unlike his CMT-free brother, Graham, the jock, wasn't all that

well-coordinated in athletics, etc., while growing up--said, " Now it makes

sense, " when he heard his diagnosis.

And I, who have always " walked funny " and have been terrible with the

hand-eye coordination involved with video games, now understand that foot-drop

and inherent clumsiness are just a part of CMT, which I have been dealing

with my entire life. (I'm sure that all you CMT-ers are aware that the

phrase " tripping over linoleum " is very real. I've been there, done that and

got the t-shirt).

Unfortunately, according to my neurologist, the chromosomal testing that

got isn't available to people over a certain age (I don't know exactly

which age it is). Well..you can GET the testing, but insurance won't

cover it and it costs thousands of $$$. The reason for this, I am told, is

because if you're UNDER a certain age, you can have children, so it's nice to

know if you're " defective, " but if you're OVER that age, you can't have

children anyway and you've already got CMT, so what's the point?

Can you spell " hideous? "

Thanks to an excellent prosthetist/orthotist ( Gest of Camarillo,

CA), I have a shoe and orthotic that lets me do whatever I want. I can drive

my stick-shift VW, ride my motorcycle, take my Alaskan malamute and

Siberian husky for walks, etc.

My nerurologist tells me I should use a cane, but I don't see the reason

for it, since the only time I have balance issues is when I encounter

stairs--but this is why God invented handrails.

I was issued a handicap placard by the DMV, but I only use it if my foot

is really hurting, which it does on rare occasions, if I've been on my feet

too long.

Considering how prevalent CMT is, I'm amazed that it's not more

well-publicized.

--

[Guest guest]

Hi, ,

Thanks for the very kind words!

BTW, I'm half Graham myself, as that was my mom's maiden name. My Graham

roots in the U.S. go back to the 1800s, when my Graham relatives settled in

or around burg, PA. Accordingly, my wife and I named our oldest son

Graham, to carry on the family name.

I can relate completely to what you say about lifelong orthopedic issues,

up to and including deformed feet. From birth, my arches were extremely

high and I always " walked funny. " I wasn't a full-on candidate for

membership in the Cleese Ministry of Funny Walks society, but my walking

pattern is...distinctive. Since no one apparently had a clue about CMT in the

1940s, I had to wear clunky orthopedic shoes until I was around second-grade

age, at which point I simply refused to wear them any more because they

looked so stupid.

Since the Graham side of my family was completely unaffected by CMT, and

since nothing was really known about my dad or his side of the family (he

was killed in WWII), we can only guess with pretty much 100% certainty that

he was the carrier. From what I understand, he probably had it himself.

It wasn't until my youngest son, , started noticing some of my

symptoms in himself that he had himself thoroughly tested and wound up with the

diagnosis of CMT, thereby indirectly diagnosing me at the same time.

just turned 37, and fortunately his only symptom--other than absent

lower-extremity reflexes--is a beginning numbness of the hands and feet. He is

VERY thankful that in med school he opted for psychiatry instead of surgery.

Reading here about the huge problems a lot of CMT patients experience, I

am very thankful that my symptoms aren't more severe. I know that things

are getting worse, but fortunately the progression is slow, and I find myself

adapting. Not that I really have much of a choice. All I know is that

things could be a whole lot worse.

Have a great week!

--

In a message dated 7/31/2010 10:53:18 A.M. Pacific Daylight Time,

agraham2k@... writes:

Welcom to all the new members!

To - you're a talented writer!!!

I felt the same way about the lack of publicity about CMT when I was

finally

diagnosed at age 42. Throughout my life, I had experienced a multitude of

'orthopedic' issues, had absent reflexes from birth, and deformed feet -

which 'ran in the family', yet no doctor figured it out. Ironically, my

total

hip replacement at the age of 38 was performed at a medical center which

was the

MDA hub in my county, yet they still didn't put the pieces together. It

wasn't

until a few years later when an astute physical therapist figured out my

father

had CMT and referred him to a neurologist that this mystery was finally

solved

for my family.

I was frustrated that the diagnosis had been missed for all those years,

through

multiple generations. I was also frustrated that I hadn't heard of the

disease

myself. Since I was a kid, I had participated in fundraisers for other

diseases, such as MS, but why had I never heard of this disease? I think

the

answer is complicated. I'd be happy to share my observations with you

offline

if you're interested, but as part of the solution, I can't help but wonder

if

your special talent may be called upon by someone someday!

________________________________

From: " _malamutesaloon@..._ (mailto:malamutesaloon@...) "

<_malamutesaloon@..._ (mailto:malamutesaloon@...) >

_ _ (mailto: )

Sent: Thu, July 29, 2010 5:45:19 AM

Subject: Re: New Members

Sorry--as a new member I've been just kind of lurking here, just seeing

what this group was about. I guess it's now time to jump into the fray, as

it were.

My name is . I'll be 67 on Nov. 4. As a native Santa Barbaran, I see

no need for change, and have lived in the same ZIP-code area my entire

life, and have had the same phone number since 1968.

I was a reporter/editor/columnist for the Santa Barbara News-Press for

over 25 years.

About 8 or 9 years ago, I noticed that my fingers were getting numb after

I'd been typing for long stretches. The numbness would eventually go away.

And then one day it didn't.

I made an appointment with a neurologist, who did EMG studies of my hands.

He also wanted to do studies of my feet.

" Why? " I asked him. " I don't have any problems with my feet. "

Imagine my surprise to learn that I had virtually NO feeling or reflexes

at all in my feet! True, there had been that time a few years previously

when I'd been walking barefoot on my hardwood floor and heard a " click

click "

sound, only to discover that I'd stepped on a thumbtack and not felt it,

but I never gave that a second thought.

One day in September 2007, something bad happened.

My left foot began to swell and change color. It was spectacular. I went

to my family practitioner, who referred me to a podiatrist. I was admitted

to a hospital that day. Turns out that I had somehow cut the bottom of my

foot and didn't know about it, since of course I couldn't feel anything,

and who ever looks at the bottom of their feet? Infection had set in with

a

vengeance. I was in near septic shock.

Half of my left foot wound up being amputated. Yikes! This was my

" clutch foot " --would I ever be able to drive my classic stick-shift

right-hand

drive 1967 Volkswagen--or my motorcycle--again?

While in the hospital, virtually all my lab values were through the

ceiling, including my blood sugar. I was erroneously diagnosed with

diabetes

type II, even though my hemoglobin A1C both prior to and after the

infection

was at or below 6. All the other blood panels have subsequently returned

to

normal levels as well.

Meanwhile, my neurologist was testing me for everything from heavy metal

exposure to multiple sclerosis, all with negative results.

Allow me at this time to introduce my son, .

turned 37 on June 4 of this year. He's an M.D., and is a

psychiatrist. He's got credentials. Recognizing that he had some of my

symptoms

(neuropathy, absence of reflexes in the lower extremities), he went

through

extensive testing, up to and including the chromosomal testing that costs

megabucks. The result?

has CMT!

Imagine that!

And since one inherits CMT from a parent--and since 's mom has no

symptoms and I have ALL of them--guess who he got it from?

Yay!

--who, unlike his CMT-free brother, Graham, the jock, wasn't all that

well-coordinated in athletics, etc., while growing up--said, " Now it makes

sense, " when he heard his diagnosis.

And I, who have always " walked funny " and have been terrible with the

hand-eye coordination involved with video games, now understand that

foot-drop

and inherent clumsiness are just a part of CMT, which I have been dealing

with my entire life. (I'm sure that all you CMT-ers are aware that the

phrase " tripping over linoleum " is very real. I've been there, done that

and

got the t-shirt).

Unfortunately, according to my neurologist, the chromosomal testing that

got isn't available to people over a certain age (I don't know

exactly

which age it is). Well..you can GET the testing, but insurance won't

cover it and it costs thousands of $$$. The reason for this, I am told, is

because if you're UNDER a certain age, you can have children, so it's nice

to

know if you're " defective, " but if you're OVER that age, you can't have

children anyway and you've already got CMT, so what's the point?

Can you spell " hideous? "

Thanks to an excellent prosthetist/orthotist ( Gest of Camarillo,

CA), I have a shoe and orthotic that lets me do whatever I want. I can

drive

my stick-shift VW, ride my motorcycle, take my Alaskan malamute and

Siberian husky for walks, etc.

My nerurologist tells me I should use a cane, but I don't see the reason

for it, since the only time I have balance issues is when I encounter

stairs--but this is why God invented handrails.

I was issued a handicap placard by the DMV, but I only use it if my foot

is really hurting, which it does on rare occasions, if I've been on my

feet

too long.

Considering how prevalent CMT is, I'm amazed that it's not more

well-publicized.

--

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Guest guest]

We tend to delve into many healing modalities here so if there are any specific

questions you want answered about MMS please feel free to ask.

IN TX