Type 2

[Guest guest]

Hi,

I have type 2 and yes I have a hearing loss.. so did my Father.

Carol

[Guest guest]

Hi Barb,

I was diagnosed with CMT type 2 last month. I'm 38 (39 next month). My lab

work came back negative but the specialist I saw said he was 99% sure it's

type 2. I guess he based it on my EMG results as well as my family history, or

lack there of. I have had feet problems since I was about 5 years old but was

very active all through school. My first podiatrist didn't even think of

testing me for anything. He just performed plantar fascia surgery on my left

foot. My second podiatrist is the one who had me get an EMG because my symptoms

of pain and weakness didn't sound like tarsel tunnel. However, the specialist

thinks I might have a touch of it and is recommending the plantar fasica

surgery on my right foot. As far as hearing, I don't really have hearing loss

but

I do have the most irritating pulse in my right ear. I've had it for about a

year, the same amount of time that I've had extreme right foot pain. I guess

you could say I hear less out of the right ear when I lay on my left side.

I've been to an ENT who did a hearing test and the results were " within normal

limits " . I'm looking for a new ENT though because I never had this pulse

before so it has to be something. I did mention it to my neurologist and

specialist and both didn't seem too concerned. If I can give you any other info

let me

know.

Elaine/NY

[Guest guest]

Barb,

I'm not sure what type CMT I have. Haven't had any testing done. I have a huge

amount of hearing loss just recently. Never have been much good at hearing, but

recently it has gotten so bad, some times I can't hear a thing, but a bunch of

mumbling. I blame it on my sinuses. Will probably be going to a Ear Nose Throat

Specialist to have it checked out.

~DEBI

[Guest guest]

I too am interested in how people know they have Type 2. There are at

least 3 subtypes that can be tested now, but when I had my test there

was only one. Type 2E. It was negative.

Fred

[Guest guest]

There has been alot of people asking about CMT type 2 since said hello to

. CMT type 2 is where the nerve is intact but has demyenilation on

peripheral nerve.

I have CMT type 2A. The only reason they know this is because that is the only

type that affects the lungs. That is a long story on its own but the main

difference between the 2 is that type 1 the muscles contract and you wind up

with clawed fingers and toes. Type 2 you are mobil but your lower extremities

are weak. I belonged to a group called cmt international based out of canada

that had the best info.

Dan *****Dan, Take a look at this link and the different " types " of 2 both

dominant and recessive. There are other types of 2 than involve lungs,

especially if CMT has affected the phrenic nerve. And research has proven type 2

can be both demylenating and axonal.

CMT has changed so much and the CMT Int. information has just about been

outdated now. And as Greg , M.D., shared with us a week or so ago, CMT is

growing very complicated. We are all affected in different ways, and even in the

same family, people are affected differently. Just so you know, I have been

placed in the neuronal/axonal/Type 2 category, based on no family history and

normal EMG/NCV's with reinnervation. I am very active, in many ways, like how

Marti described she was. And I am 52 with no real progression since I was in

high school ~ Gretchen

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

[Guest guest]

I have Type 2, with hearing loss and shortness of breath. I am not a smoker. I

have high arches and hammer toes. I don't have foot drop but the soles of my

feet hurt a lot when standing. My balance is bad requiring a cane to walk.

Wade

[Guest guest]

Thank you everyone who has replied to my questions. I too have always has a

slight hearing loss which has gotten worse over the yrs.My late son was deaf

and my 7 1/2 mo old grandson has a 50% loss in one ear and 80% loss in the

other ear. He wears hearing aids already when they aren't in his mouth! I did

pass on CMT to both my daughter and my son. When my grandson showed up with his

hearing loss it sent red flag signals to me and le(daughter). Other

than his hearing loss is very healthy and strong.

Again, thanks everyone.

Barb Fl

[Guest guest]

Hello Everyone

Thank you to all of , I enjoy reading the comments from leg braces to

filing appeals.

As a receipent of CMT Type 2 I often wonder where this world is heading to.

Don't give up. We all have are down days from numbness to

painfullness.

I hail from Connecticut. I am employed with the State of CT. I wear

AFOs and a mobility scooter. My legs lower extrmities are cold (numb) no feeling

no nerve sensation.

But every morning I wake up, new dawn, new day, and wear my AFOs help

so much.

r

[Guest guest]

Blum,

Type 2 --- I think. This past Jan I enrolled in University of Miami DNA study.

Kim

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