What is Classic CMT?

[Guest guest]

Hi everyone,

My name is and at the age of 14 I was diagnosed with CMT. At that time

the only symptoms I had was the arched foot. I just considered my self a

teenager with ugly feet! and pushed the idea

out of my head that I had a disease. Over the years the symptoms have

gotten worse I am now 27 with high arched feet, curled toes, weak

ankles, and I have noticed that it is getting harder for me to walk

because of foot drop and feet turning inwards.

I went to see a neurologist about a month ago for the first time since I was 14.

He told me that I had classic CMT, does any one know how serious classic CMT is?

I see on here that most people are diagnosed with a type of CMT so I'm confused.

I have read about CMT on the internet but am still at a lost for words when

people ask me about it. I see on here that some people are in wheelchairs, and

walking with canes.

My mom is 45 and has CMT. The only symptoms she seems to have are the arched

feet and hammer toes. I just want to know how serious this is and what kind of

shape I will be in in the future. If someone could please help me with this I

would greatly appreciate it!

Thanks,

[Guest guest]

,

There is really no such thing as 'classic' CMT. The manifestations

(symptoms) of CMT in each person's life are unique to their own

genetic code. And members of the same family may show completely

different symptoms, although they have CMT. I am guessing your

neurologist was referring to CMT 1A, which is widely known, and about

70% of all people with CMT have this type. (It is genetically

dominant and also demylenating).

A long time ago, say in the 1960s when I was diagnosed there was

just 'CMT'. Years later, say in the 1980s, a newsletter I read

informed me about CMT 1, CMT 2 and CMT X. Then in the 1990s, the

genetic DNA tests were born, pinpointing exact mutations on specific

chromosomes. That's how we now have so many 'sub-types'. Take a look

at this link (CMT is known now as Hereditary Motor Sensory Neuropathy)

http://neuromuscular.wustl.edu/time/hmsn.html

CMT is different for us all, although we share some commonalities -

some have high arched feet, but some have flat feet. Some have foot

drop, others do not. Some people are toe walkers. Falls, fatigue,

uneven walking patterns, lack of balance, hand tremor, muscle

rigidity and tremor are also common, but not all present with this.

Thus, CMT is a 'syndrome'.

I was diagnosed when I was 10 by a doctor who watched me walk up and

down his hallways and examined my shoes. I'm 55 now, very active,

not needing a cane or AFOs, but custom orthotics in my shoes are a

godsend. I do have hammertoes. Early on, I had foot surgery to

correct my feet from rolling. My tremors are controlled by

medication. Other than that, I work, exercise, play, live and love.

The muscle rigidity and spascity I had in my teens is gone. One year

I had electrical type 'zinger' pains in my left arm, but medication

stopped that and I no longer have the pains, nor do I take that

medication.

No one in my family has or had anything resembling CMT whatsover. One

of the genetic testing labs has discovered that 33% of those who had

the DNA test were clients that had NO family history. My last EMG

(the 3rd one in my life) showed all normal results with

reinnervation, which leads to a diagnosis of CMT 2. Because I have no

family history, my neurologist is convinced that it is a recessive

axonal type of CMT 2.

We are all different in our approach to living with CMT as well.

Supplements, AFOs, alternative approaches, nutrition changes are some

of the ways we can manage CMT. What works for me is Vitamin E, eating

a heart healthy diet, drinking artesian water, exercise, keeping

stress low, being positive and staying open-minded.

Yes, CMT is serious. The phrenic nerve can be affected making

breathing difficult. Swallowing problems can also be present. Spend

some time going through our ten years of archived posts, plus look

over the information in our Files section.

Gretchen

[Guest guest]

Gretchen, thanks as always for the informative post. I enjoy reading the

different views.

Matt

[Guest guest]

So what's wrong with those of us diagnosed in the 60's when it was all

just CMT (most often 1a) saying we have Classic CMT?

You know kind of like Classic Rock. ;-)

[Guest guest]

Sometimes I say I have classic CMT symptoms.

[Guest guest]

Hi ,

We just don't have anyway of knowing how each of us will be effected by CMT.

I have CMT and 3 of my children do. They are all affected differently. My middle

son (16) has needed AFOs since he was 4 or 5 years old. My daughter is 15 now

and has never had the need for AFOs and seems to be doing really well. My oldest

son is somewhere in the middle of the two. I am not sure what type we have. I

assume we have 1A.

When you have a few minutes you may want to look in to our Files under

Vitamin C, and Citicoline. You may find them interesting.

[Guest guest]

I was diagnosed and told that my EMG / NCV and feet all present " classic

patterns of CMT " with a diagnosis of CMT1A, confirmed by a gene test.

Donna from London