Re: welcome Suzanne/childhood vocal cord paralysis

[Guest guest]

Hi Suzanne,

Congratulations on the birth of your third son. Sounds like it has

been a very difficult time for you, I hope I can be of some help.

My name is and I was diagnosed with CMT1A in 2001 although

looking back I have had symptoms since early childhood and I am now

39. I have had the usual problems with my feet but my main problem

has been difficulty in breathing. Obviously this made it very difficult to join

in any sports etc during my school years. My doctor has been treating me for

asthma since my teens.

However the pumps had little or no effect and it wasn't until I had my first

child that I decided to get another opinion. During labour the aneathetist was

convinced I did not have asthma and thought it was an obstruction due to me

gasping for air.

To cut a long story short I have had bronchoscopies, laryngoscopies

and several other tests since 1997 but I have always been put to

sleep and this is the reason the doctors feel they missed the proper

diagnosis of vocal cord paralysis. I have recently been attending St

' hospital in London and have been informed that I have

probably had this condition since birth and it may well be related to CMT.

I cannot tell you how many times I have been made to feel like I am

not telling the truth or the doctor has said that I must be taking the pumps

incorrectly or on one occasion I was told to lose weight even though I have

never been that heavy!

As the cords are paralysised in the bi-lateral position I have been

told that they do not move apart when I try and inhale which

explains the difficulties that I experience on exertion etc. I have lived with

this condition for 30 plus years so I hope this has helped you.

Surgery is an option but at the moment the doctors have agreed on a

wait and see policy but I am hoping to have a breathing machine (bi-

pap) of a night time as I do suffer from morning headaches and

fatigue.

I found a lot of information on the website -

www.lindacrabtree.com/cmtnews/

Good luck Suzanne, I hope you find the answers you are looking for.

Please contact me if I can be of any further help.

Sorry for any spelling mistakes.

[Guest guest]

Dear Suzanne..

Congratulations on your new baby boy.

We are in Ottawa...there is supposed a very good CMT doctor in Hamilton

(I think his name is Mark Tamoplosky..something like that). Here at

CHEO they can do a CMT DNA test in a week if pressed...Hopefully they

can do that for you and settle the question of the paralysis if the

other tests don't come up with an answer.

DJ isn't the only infant onset variation, some of the recessive type 4

versions are also. DJ is thought to be a more severe version of 1A.

Our son was early onset, although certain features we didn't recognize

as linked until after the fact...he showed definate clinical symptoms

(balance, foot structure etc.) by about year old and has 1A.

Best wishes

Sally