Re: MS and CMT

[Guest guest]

HI-

My name is Kate( not erika....my husband is so erikate).....I was referring

to the research I know MS is an inflammatory, auto-immune disease....the

plaques( or lesions) are caused by the DEMYLENATION of the sheath (AXON) of the

nerves in the central nervous system.....the research I referred to talked about

schwan cells that go bad....

Is it not a bit odd that someone has the exactr same process in 2 seperate

nervous system? We had 25 yes 25 doctors tell my husband NOTHING was wrong with

him....that he was CRAZY, then they found the lesions on his spine and in his

brain.....he was diagnosed with MS..

This is the same man that had a tibia leg lengthening surgery ( 1st one in the

US.... EVER) 5 different surgeries over 3 years....he has extrememly high arches

and significant neuropothy in both lower legs....no doctor ever paid

attention......

We also had 3 different neurologists claim it would be IMPOSSIBLE to have both

MS and CMT....( these are all doctors in the St Louis area....most part of the

BJC Health system...)

Then he had a nerve conduction test...we know his birth mother has CMT, and her

father and 2 brothers died in their sleep...just stopped breathing, however they

are Christian Science and don't go to the doctor......

Yes there is " treatment " for MS, however most of the " treatments " make you just

as sick, sometimes sicker....His first steriod treatment...he ended up with

septic pneumonia....

Symptoms between the 2 are very similar, he can't really tell you which is

which.......

Kate

>

> ,

>

> Multiple sclerosis (or MS) is a chronic, * Inflammatory* often disabling

disease that attacks the * central nervous system * (CNS), which is made up of

the brain, spinal cord, and optic nerves. It is not 'inherited'. There is

treatment for it.

>

> Learn about the CNS at

> http://en.wikipedia.org/wiki/Central_nervous_system

>

>

> CMT also known as hereditary motor and sensory neuropathy (HMSN) or peroneal

muscular atrophy (PMA), comprises a group of disorders that affect * peripheral

nerves* . The peripheral nerves lie * outside the brain and spinal cord * and

supply the muscles and sensory organs in the limbs. It is inherited. There is no

treatment - yet.

>

> Learn about the Peripheral Nervous system at

> http://en.wikipedia.org/wiki/Peripheral_nervous_system

>

[Guest guest]

Hi Kate,

Sorry for the name goofup. It is hard to respond to people when only an email

address or name is present.

While it * is * possible to have MS and CMT, it would be very rare, but just

because we have CMT doesn't mean we are immune from other illnesses, in my case

Rheumatic Fever, for example.

Just curious, were any of these docs from Washington University in St. Louis?

I have known a number of people with different types of MS who do very well with

Rebif. I also have never known anyone with MS to have foot and leg surgeries. As

for brain lesions, research has discovered lesions on some persons who are

diagnosed CMT X.

Gretchen in So. Calif.

1st diagnosed age 10

All normal EMG/NCVs

No family history

Perhaps a Recessive Inheritance

Or Perhaps Not

[Guest guest]

Gretchen-

No problem about the name....:-)  my own fault .....BJC ( Jewish ) is

kinda " related " to Wash-U school of medicine.....we questioned Dr Barry Singer

if he could just have CMT, but he is very convinced that he has both.....

As my husband's 1st and most prevalent " symptom " was chronic nausea and

vomitting, Rebif wasn't and option-nor was Avonex.....He also has problems

keeping weight on......he is about 5'4 " and if he weighs 115, it's a good day.

He can however consume an incredible amount of calories a day....and it's fairly

normal for him to sleep 15-20 hours a day.....

Thank-you for the information......maybe someday he'll actually have a decent

quality of life....we keep hoping.

Kate