Newly diagnosed....but suffering for a long, long, time.

[Guest guest]

Hello everyone-

My name is Kate. I have been with my husband for almost 20 years now. We've

been through about everything 2 people can together. He was born with 1 leg

shorter then the other....significantly. He spent several summers in Shriner's

hospital having a Wagner Tibia Leg Lengthening. He was also born with 4 toes on

the shorter leg. He is now almost 5'5.

The summer of 1999 he became very ill....after a week of non stop vomitting, he

began vomitting blood. This was the start of what would become the most trying

time of our marriage. Initially they thought it might be non-hodgkins lymphoma.

Negative. Exploratory surgery and the removal of 1-1/2 inches of his instine

follwed. Nada. Doctor after doctor, drug after drug. The pain increased, and

increased. He gave up on doctors...and traditional medicine. The years passed

and it came to a point that he was vomitting daily....at times he would be in

bed for weeks at a time. Eventually the vomitting became so bad that he

perferated his esophagus.....finally they a mri of his brain....it showed

several lesions....spinal time was positive as well. (I might add that just

prior they found his TSH was 388....yes 388! He is lucky if he weighs 120 with

steel toe athletic hikers and fully clothed!) They diagnosed hiim with MS-but

the 1st neurologist wasvery supicious of his build and extremely high arched,

stork like legs.....( his birth mother, who left him at age 4 had re-appeared

and although she was on disability for Fredrich's Ataxia, had been told she

really had Charcot Marie Tooth.....she was raised a Christian Scientist, and

didn't believe in conventional medicine).....

He has been on Copaxone for MS for one year....a recent nerve conduction study

has given him a diagnosis of CMT. This scares him far more then MS ever did.

His birth mother has little to no muscle on her legs....very little movement,

sensation in her hands or feet. She does walk with a drop foot. An uncle died

aat a very young age ( 40's) for no apparent reason....in his sleep. His

grandfather died the same way.

The depression and anxiety my husband struggles with is immense! I sometimes

don't know what to do....there are times he could sleep forever...yet other

times when he can't sleep at all....He hasn't held an actual job in almost 10

years.....since it's been over 10 years, he doesn't qualify for

disabilty.....and I make too much for him to receive SSI...go figure, when we

first met, he worked 80+ hours/week....it " kills " him not being able to " jump "

out of bed in the morning....this pains me to all ends! I want him to be

happy....I would gladly give up my arms and legs for him to find his spirit!(

honestly I would....and I am an avid runner/triathlete...finished my first 1/2

ironman....70.3 miles this fall).

1.) Does anyone know if there is any correlation between auto-immunity and /or

Multiple Sclerosis and Charcot Marie Tooth?

2.) Is this chronic dibilitating pain ( primarily in his gut) associated with

CMT? How does he differentiate what is MS and what is CMT?

3.) What about breathing and speech slurring?

4.) As his wife, what can I do? How can I help?

any information is more then welcome...we have 2 beautiful, smart, talented

children ( 10 and 14 ) they just want thier father.

Thank-you! My prayers are with each and every one of you " ....may God Bless you

and cradle you in the palm of his hand...and give you COMFORT and peace! "

Kate