My First Post Here (long) I have CMT 1B

[Guest guest]

This " first post " of mine is also located at other subject topics....

Hello to all:

My name is Andy I have CMT 1B, and this is my first real post. I was

wounded in Iraq Aug 21 2004, and here is a list of things that have

happend from that point on:

Closed Head Trauma or better know as Traumatic Brain Injury (TBI)

Dislocated both shoulders

Full Spinal Cord Whiplash, C Spine Damage and a Tear to L5 S1

Damage to my Right Optic Nerve

Damage to my Vestibular Nerve with Bilateral Hearing damage and

Vertigo

Onset of Numbness in Hands, Forearms and Feet

Tingle Senstaions in Hands and Feet

Prior to this incident I had no symptoms of CMT, I was a Military

Combat Officer and, I was 47 years old at the time. I am still an

outpatient till this day....

In Jan 2005 my Father died

Aug 2006 CMT 1b Confirmed

Nov 2005 Sugery to repair Left Shoulder

Nov-Dec 2005 Inpatient for TBI related issues

Jan 2006 Onset of Intense Vertago, Walking Stick and

Feb 2006 Seen at Wayne State CMT Clinic

May 2006 Rolling (AODs to try and stop my hands from drawing

up)

Nov 2006 Youngest Son Deployed to Iraq as an Infantry Soldier

May 2007 Return to Wayne State (AODs for my Feet and Legs)

July 2007 Inpatient Sugery to Repair Right Shoulder (Chronic Pain and

Balance Issues Required Addmission

July 2007 Divorce from Wife of 30 yrs

July 2007 Found that using a WheelChair gave me a lot more energy to

do other things, I can still walk but it is very painful to do so

Aug 2007 it's Confirmed that CMT has affected my Right Eye and my

Voice

I tell you all of the above to let you know that I understand the

issues of having many sypmtoms of CMT that can't be well defined from

other injuries. Below is a few of the things I learned on my own:

The CMT is worse in my Hands than it is in my Feet

EMGs can vary, my guess is the expertise of the user....I have had

many EMGs redone because they did not meet expetations or reflect

results of other EMGs. So is the information really empirical?

Be careful not to confuse muscle weakness in the legs with balance

issues, they are two completly different issues.

I have multiple Expert Doctors that claim the other is wrong--Get

many 2nd ops about each issue(s)

Don't be afraid to use pain medication and/or a wheelchair, scooter,

ect it it provides you with a better today and tomorrow

I pay for yesterday each morning!

I spend each day in EXTREME PAIN, and it's a given, but ANY MISERY IS

MY FAULT

I THANK GOD FOR EACH DAY! I am a VERY VERY LUCKY MAN.

I have two outstanding sons my oldest is an RN on his way to being a

PA, and my youngest is still a Infantry Soldier. I know that each of

them have directly saved life(s). Just think what an Impact on other

famalies it would have been if I had been told long ago that I had

CMT 1B and my wife and I had decided not to have children? God put

them here for a reason... My wife had a much harder time with all of

this than I did and our divorce was not her fault..I still love her

very much, but we just can't live together now.

I know it's a lot of information, but I have been reading the other

Posts and felt complied to write. I left a lot out, I have taken a

lot of different medications, and still do, for nerve and chronic

pain. That kind of history may help someone else, so ask if you want

to know what has worked for me.

My best to all, and God Bless.....Life is a gift!

Andy