Re: You have CMT ohhh sorry we can't help you........Hot Potato.........

[Guest guest]

Andy,

Gees, what a circus you've been through. Just a few thoughts, have

you considered looking into Helios braces?

Also, in my experience, I've had to learn to manage CMT on my own.

(nutrition, diet, exercise, vitamins, adequate rest) If I need a

pressing medical need that I can't seem to workthrough by the above,

I either go to my Internist or Orthopedist/Neurologist.

My Internist was the one who directed my to Stefan at Swiss Balance

for in shoe orthotics. I can't remember where you live, but if your

out west, I wholeheartedly recommend Stefan (Santa , CA)

Can you pinpoint exactly what you need/want? (like AFOs that work,

medication for fatigue, an exercise program, nutritional help, work

on balance, others?

Have you given any thought to trying Vitamin C or Citicoline?

Let us know how we can help. Maybe your MDA clinic would be of more

help than the professionals you have seen.

Gretchen

[Guest guest]

Hey Andy,

I have been where you are. At 33 my CMTX went downhill again.

The neurologist is only helpful until he gives you a diagnosis. After

that they are no longer useful,and they know it. There credo is

" diagnose and vaminos. "

You should take it easy, and I know this is a huge, awful thing to

hear, but it is true. The harder you work, the worse you are going to feel. You

have to adapt your life so you don't make yourself so tired.

This means giving up lots of stuff. CMT is especially not nice for

active vigorous men. You may have to stop with career aspirations like those of

your healthy peers.

I spent years and years in denial, which helped me until I was about

33, when I collapsed in a state of exhaustion. This took 6 months to

recover from, and I had to release my career expectations...as I was

not going to be able physically to keep up.

I lived abroad, learned 2 foreign languages and was valedictorian of

my grad school class, graduating with an extremely relevant degree at

the place and time, the EU in 1993, where I was and wanted to be. But then I

found I could not do the kind, type and amount of work that

is necessary for a high level career.

I know this is going to sound onerous, but I had 3 special pairs of

shoes made at the department of rehabilitation of the University of

Amsterdam's Academic Medical Center. In The Netherlands they are well ahead of

the USA in the construction of specialized shoes for these kinds of problems.

In high school I had exactly the same issues with orthotics that you

describe.

These shoes constructed for me used two bumps on the outside of my

heal to force my foot into the correct position while in my shoe. It

is actually a (stylish) low boot with Velcro fasteners, and a

specially made insert. Because my foot is in the right position, my whole leg,

from the hip, to the thigh, to the knee, to the lower leg, ankle and foot, all

line up in the right position. This has allowed me to stop rolling my shoulders

forward in order to maintain balance, and I can now walk with my head up,

shoulders back, and chest out. It makes me look and feel much much better.

I can also walk with out fear of falling, ad I can stand unassisted

without swaying as if I am drunk.

Unfortunately, and I am in LA and my medical care is at Cedars-Sinai,

I am told there is nothing in the US market like the shoes I have.

They were not covered by my insurance, which is Medicare. And they

cost a bit more that 2000 dollars a pair.

I can also recommend yoga, as 2 moths of yoga have produced reduced

pain, and major increases in strength, flexibility, coordination,

balance, and proprioception, as measured by a physical therapist, to

the point I was discharged from physical therapy!

Once again, I have to say as I said to Amy, I believe, you get the

care you demand. Don't take no for an answer, and look for CMT specialists if

possible. I have run into many, for example at the University of Amsterdam,

where they had just finished a major study on CMT when I went to them for help.

Also in college I had a CMT related accident, and I ended up with a

doctor who had studied CMT at the Mayo Clinic.

I worked with the doctors in Amsterdan, who made a specialized hand

brace for me as well, which forces my thumb, which does not oppose at

all, into a more functional position. The brace was to see if an

operation to move my thumb to the same place using internal structure

would be helpful. The results are that we think an operation would be

helpful.

If you want to try and contact them, and they do speak English, I'll

give you the contact information in an email if you send one.

The pain guy might say something like, " I can't see any reason why you

would be in pain from this disease. " I have had it said to me before.

If you are in pain, and you need opiates to quell it, don't be afraid

of them and don't take no for an answer.

I have had to educate more doctors about my disease than I care to

remember. So you bare definitely not alone here. But the group of doctors I have

caring for me in Los Angeles and Amsterdam are pretty well informed.

I hope this helps.

[Guest guest]

Hey ,

Thank you so much for your reply.  I feel better knowing that I am not alone and

other people have had the same struggles.  I would definately be interested in

hearing more about the braces in Amsterdam and mobility is priceless so I won't

let money stop me from getting the help I need.

I definately understand how we need to educate doctors who know so little about

the disease.  The PT I recently saw did not even know how to put it in the

computer cause its not something of the ordinary.  I also think those who are

too specialized on CMT may be harmful too.  The reason it took me 10 years to

see a CMT doctor was 10 years ago I was given a CMT Specialist who even wrote a

book on CMT.  It took me a year to get the appointment and I had to drive a

couple hours to get there.  Apparently he was known to be the 2nd best in the

world in his study so I was hopeful. 

As I waited in the waiting room staff there said how lucky I was to be seen by

him.  I waited impatiently for the doctor to arrive.  He looked at me and said

" you have chronic CMT " and that I will have to adjust my life accordingly cause

I would be in a wheelchair by the age of 30.  Well I am 33 and still walking so

he was wrong there. 

When I asked what can be done he offered nothing and said again I have chronic

CMT and he felt surgery, pain management and PT all contribute to making the

disease worse.

I have not given up yet I need to slow down like you said.  I would say I would

retire and collect SSD but since I am college educated and work in an office and

never had a period of time I wasn't working would make it so they denied me. 

Even if I was approved for SSD it would only pay me half of what I earn now and

I can not afford that at my age and especially having a young child.  I have

been falling a lot at work and that is concerning.

Again I appreciate your time replying to this and I would appreciate the name of

the doctor and name of the brace.  I will let the group of my progress or lack

their of.

Andy

[Guest guest]

Andy,

I am just getting to my email and I am horrified by what you have had to go

through, but not surprised since this is not all that different than what I went

through, except it was 20 years ago! in this day and age, these doctors should

be ashamed.

Where do you live?

Jackie

[Guest guest]

Andy,

I too at age 25 was told by a very renowned neuromuscular doctor at one of the

best known hospitals in the world that I have CMT and will probably be in a

wheelchair at age 40 and no need to go to physical therapy, just do what I do

naturally in a day, that is enough. I believed him and regret that I did not

push the exercise program more when I was younger. (47 years old now).

Do you have a department of vocational rehab in your state? When I was having

difficulty walking far in my office years ago, I went there and they came out

and did an evaluation of my workstation and then ordered me a scooter to use at

work, plus some ortho pillows and other stuff for when I am sitting at my

computer to keep my body from tiring. This was all paid for by the state.

Also, have you considered one of the 3 wheel walkers that has the seat to use at

work. Last night, I had my mother walk in my house with one and I was amazed at

how her gait improved. She walking walking fast and with her head and shoulders

held up and her confidence from losing balance improved greatly. Just try to use

those type of adaptive devices at work to allow you to continue working and save

your energy for your daughter.

I know what you are going through. I was a working single parent for 18 years

and I could never have gone on disability for healthcare and financial reasons.

If your quads are fairly strong, you should check out the Helios braces at Ortho

Rehab Designs in Las Vegas. They work wonders for balance and proper gait and

Mitch will work with you for an entire week to make sure the braces fit properly

before he will allow you to go home! If you quads are extremely weak, you may

want to keep researching.

Hang in there!

Jackie