Re: Toronto CMT

[Guest guest]

Hi Roxanne,

My name is Betty and I live in Toronto. My 16 years old son has severe CMT. I

don't have or not showing yet, but I am suffering from panic and anxiety

disorder. I am on medication and see a psychiatrist regularly. My husband just

lost his job last week. I know what you going through and what do you mean by "

HELL " . Be strong ! Your son need you.

Betty

[Guest guest]

Dear Betty:

Thanks I do try and remain strong just for my son as I'm a

single mom with no other family around,it gets pretty lonely at times

because I can't get out and walk too much but I try and keep busy around the apt

as much as I can.

If you dont have CMT does your husband have it?

I wish you and your son all the best,I know all about meds I'm on plenty for

depression,anxiety, pain, and I also see a psychiatrist but

after seeing him for 7 yrs I don't feel any better.

Sorry to hear about your husband losing his job hoping something comes up soon

,I was wondering how the CMT is affecting your son because my 8 yr old has it

and I'm very worried about the future for him as he is already suffering enough.

Best Wishes,

Roxanne

>

[Guest guest]

Dear Roxanne,

My son is the only one has CMT in my family. He had surgery on both his feet two

years ago. It did nothing to improve his life, he lost more muscle on his legs

due to on wheelchair for 5 month. He is wearing braces and using cane in school.

He never complained anything and he is doing very well in school. I am scared to

think about his future. How is your son doing?

I am suffering from depression too. I am on Citalopram & Clonzaepam. I tried to

quit it, but wouldn't get up to work without them. If you want to talk to me

during the day you can call me @ 1 800 263 3430 ask for ext 35569.

Take care and best wishes!

Betty

[Guest guest]

Dear Betty

My son is doing ok except for when he trips and falls he just seen his Doctor

here in Canada and feels he is doing ok for now. How is your son coping? I have

not called you as of yet as I have been in a very depresed mood lately and no

energy to do anything but being a single parent you just have to get up and do

it all anyways.

Take Care/Good Luck/Say hi to your son for us!

Roxanne

[Guest guest]

Dear Roxanne,

My son is doing much better now, he goes to school without using his cane a

month ago.

I am have a very difficult time for the past few weeks, struggling with this

panick and anxiety disorder, trying different medications and see my

psychiatrist every week. I am a very strong person and I will overcome this, and

I think you will too. I hope to talk to you one day.

Take care!

Betty

[Guest guest]

Hi,

Is anyone of you aware of an excellent CMT specialist in Toronto? I

mean someone who is specialist in this disease.

thank you

[Guest guest]

Hi my name is Roxanne and I dont know about Toronto but there are 2 great dr's

in Hamilton which is not far from you DR MARK TARNOLPOLSKY- works out of

Mcmaster University Hospital on Main St W ,another one is DR GOODWIN on

Concession St in Hamilton I hope this helps!!!!!

[Guest guest]

Hi there

My boyfriend's family has CMT and they know hardly anything about it.

It surprises me how they just adapt and live their lives not wanting

to know anything more about it etc. I on the other hand want to know

about it. We live in Toronto...are there any specialists, support

groups, any kind of place we can find more about it?

Thanks!

[Guest guest]

You can search our past messages/archived posts by clicking

on 'Messages' and using 'Toronto CMT'. There are a number of posts from

people with CMT and also those offering doctors names.

[Guest guest]

I have tried to do a search...but can't seem to find anything. Maybe I

should be more specific. My BF's family has it, but he doesn't. He is

now 36 years old and as far as he knows, doesn't have it or carry it.

My concern is, how do we know this for sure?

Hence the reason for specialists, support groups...someone I can talk

to...any help?

[Guest guest]

Hi Mjjtwins!

You have found a wonderful resource for information about CMT!  We are happy to

help you!!!

The question is...how does your boyfriend know whether or not he has CMT,

correct?

To get an accurate answer, he needs to be examined by a neurologist.  The

neurologist will be able to diagnose CMT through genetic testing and/or

electrodiagnostic testing, i.e. EMGs & nerve conduction studies.

Do you know what type of CMT his family has?

There are many types of CMT.  The inheritance pattern isn't the same for all

types of CMT.  In general, children have a 50% chance of inheriting it, but the

percentage does vary depending on the type of CMT. 

Here's a link with some general information about each type of CMT: 

http://www.charcot-marie-tooth.org/about_cmt/causes.php

This same site has information on typical symptoms: 

http://www.charcot-marie-tooth.org/about_cmt/symptoms.php

Does your BF have normal looking feet?  Or does he have high arches or very flat

feet?

Here's a more technical link that you may want to review: 

http://neuromuscular.wustl.edu/time/hmsn.html.  It talks in detail about the

symptoms of each type of CMT. 

I have CMT1A.  This is the most common type of CMT.  If you click on that

button, you will see what my feet look like.  This high arch/hammer

toe formation is very common.  His hands may still look normal at 36.

Does he have deep tendon reflexes?  In other words, when the doctor hits his

knee with a little rubber hammer, does his foot jump?  For most of us with CMT,

there are no reflexes, even at an early age.

Other common symptoms include not being athletic, tripping a lot, calves that

look like an upside-down champagne bottle.

The symptoms are different for each type of CMT and they are even different for

each person with the disease.  Even people within the same family can have very

different symptoms and varying degrees of severity with the disease.

If your boyfriend wants to know the answer for sure, he needs to go to a

neurologist for an evaluation.  I'm not sure how that process works in Toronto. 

Perhaps you have to ask for a referral to a neurologist?

There have been tremendous advances in genetic testing in recent years.  Many

types of CMT are now identified through genetic testing, but not all types of

CMT can be identified through CMT testing yet.  So a positive answer on a

genetic test is a 100% yes, but a negative answer doesn't necessarily mean 'no',

since it's possible his family could have a type of CMT that hasn't been

genetically identified yet. 

If the family has been diagnosed through genetic testing, that's great!  He

could just take the same test and get a definite answer.  If not, it may take a

few more tests to get his answer.

It's wonderful that you want to help him get an answer.  It's definitely

something that's good to understand before starting a family himself.  Here is

some additional information on the inheritance pattern: 

http://www.charcot-marie-tooth.org/about_cmt/genetics.php

I hope that helps.  If you have additional questions, please post your questions

and we will do our best to help!

[Guest guest]

Wow thank you. that is very helpful .

I don't believe he has it. He shows no symptoms that you have

described. I think he was tested as a kid but my concern is that it

was in a small town and they didn't know very much about it.

I don't believe his family even know what type they have. that is what

is crazy about it. I ask them and they are like- there are different

types? His Mom and both of his brothers and they are all very different.

I think I will ask the one brother who seems to want to know more

about it. The others are fine knowing they have it and thats that.

My concern is mostly that my bf might carry it. He doesn't want to

have children if he carries it. this is his decision. (his brother had

children- none of them show any symptoms)

What age can you tell for sure if you have it?

thanks again guys,

Rennata

[Guest guest]

Renatta,

The only way your bf will know if he has CMT is most likely through

neurological exam including family history info, an EMG NCV, then

followed by the DNA test. CMT can affect anyone at any age, whether it

is a small child right on up to a later in life onset. CMT can also

affect members in the same family differently.

If you and your bf are planning on children, and he does have confirmed

CMT, you might be interested in Pre-Implantation Genetic Diagnosis.

Look in our Files section for " Pregnancy in CMT " , click to open then

read selected articles.

Gretchen

[Guest guest]

Thank you. So someone can suddenly show symptoms in their 30s? or will they have

shown them for a while?

I found a specialist near Toronto. I'm going to try and convince his

whole family to see them. I don't want to seem pushy though.

Renatta

[Guest guest]

Renatta,

Yes, someone can start to show symptoms in their 30s, and on up too.

There are also people who may be 'clumsy', or 'tired alot', or given

the wrong diagnosis once (like Polio, MS, MD, etc). I was about 7 when

I first started showing symptoms - I fell on the playground more than

the other kids. My 'school shoes' had a special build-up inside. Three

years later I was diagnosed with CMT.

I'm so glad you found a good doctor. Good luck with getting the family

in!

Gretchen