Age of noticeable onset

[Guest guest]

In a message dated 11/16/2000 7:32:29 PM Pacific Standard Time,

swolfnc2@... writes:

> . Help!! am I normal?

>

> Trying to keep a " not numb yet " chin up

> Dick

>

>

>

Well, I have yet to meet anyone " normal " , LOL

CMT2 can act just like CMT1 .. Seems like CMT2 does hit after 10 years old..

Not all cases tho.

Hows that for clearing thing up.

jenny

[Guest guest]

In a message dated 11/16/00 7:32:31 PM, swolfnc2@... writes:

<< It seems that many with cmt2 " start late " Is this true, or just

observation? >>

I know of type2 CMTers who were diagnosed in infancy or early childhood, and

others who were diagnosed in every decade after that. It is said to show up

later than type 1. It seems to vary a lot, like everything else about CMT.

When my mom suddenly got weak, after 70 years of being very active, her docs

thought she had ALS (Amyotrophic Lateral Sclerosis, or Lou Gehrig's Disease)

because her symptoms progressed so fast. Her docs told her to exercise hard,

which was the worst thing she could have done, but she wasn't diagnosed and

we didn't know.

CMT often goes in spurts and then slows or stops for a while.

Have you tried inserts, orthotics, and that sort of thing to help your

walking? Are you walking a lot????

I look back fondly at the time I was just numb. It was better than what

followed, but I'm not really complaining. Just stating facts.

Good luck.

Kat

[Guest guest]

Hello All, Marilee here;

I have had numbness for 3 years now. Toes too knees and fingers too

elbows. I have a standing joke with my family and friends, that if any

needs to be lift that is hot. They always say; let Marilee do it, she can't

feel it.lol I'm a lil' like Mickey " who will eat anything " .

Now; I am turning 43 yrs. old, and muscle weakness is happening very

rapidly. Weakness, in with my torso, neck and now swallowing. This

depletion of muscle strength, is causing major, immediate life style

changes.

But, I am hanging on, and keeping faith. I believe, the mind is my

strongest tool. So, I love to stay positive and happy.

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Hi all, Dick S. here

I have been reading posts and it seems that alot of cases start eiher

early in life or later in life. It seems that many with cmt2 " start

late " Is this true, or just observation? It also seems like you all

talk of slow progression. Mine seems to be steamrolling with a

faster and faster pace. In July I had numb toes and worsening

balance. Now in early Nov. Numbness extends up my calf, feet have

more numb places than feeling places. Walking is a constant(75%) pain

in the arch/tendon area. MOre limping than not. Help!! am I normal?

Trying to keep a " not numb yet " chin up

Dick

[Guest guest]

> In a message dated 11/16/2000 7:32:29 PM Pacific Standard Time,

> swolfnc2@a... writes:

>

>

> > . Help!! am I normal?

> >

> > Trying to keep a " not numb yet " chin up

> > Dick

> >

> >

> >

>

> Well, I have yet to meet anyone " normal " , LOL

>

> CMT2 can act just like CMT1 .. Seems like CMT2 does hit after 10

years old..

> Not all cases tho.

> Hows that for clearing thing up.

> jenny

I guess all of us are in the same boat dressed in different clothes.

P.S. I do think Igor picked my brain from the " abby-normal " pile:-)

Look I'm geing happier (yea)

>

>

>

>

[Guest guest]

Dick,

I have been labeled Type 2, and was diagnosed at age 5 or 6. My

daughter started showing symptoms at age 3, and I had her diagnosed

at age 4. My Dad was not diagnosed until his 30s, after my oldest

sister was diagnosed.

Ruth Warren

> Hi all, Dick S. here

>

> I have been reading posts and it seems that alot of cases start

eiher

> early in life or later in life. It seems that many with

cmt2 " start

> late " Is this true, or just observation? It also seems like you

all

> talk of slow progression. Mine seems to be steamrolling with a

> faster and faster pace. In July I had numb toes and worsening

> balance. Now in early Nov. Numbness extends up my calf, feet have

> more numb places than feeling places. Walking is a constant(75%)

pain

> in the arch/tendon area. MOre limping than not. Help!! am I

normal?

>

> Trying to keep a " not numb yet " chin up

> Dick

[Guest guest]

> In a message dated 11/16/2000 8:19:41 PM Pacific Standard Time,

> warrenre@h... writes:

>

>

> > Dick,

> >

> > I have been labeled Type 2, and was diagnosed at age 5 or 6. My

> > daughter started showing symptoms at age 3, and I had her

diagnosed

> > at age 4. My Dad was not diagnosed until his 30s, after my

oldest

> > sister was diagnosed.

> >

> > Ruth Warren

> >

> >

>

> Well there goes my theory! LOL

> Long ago I read type 2 hit in the 20s and 30's. That sure was wrong.

>

>

>

,

That's why until recently I was always so confused about my type.

I had read the same thing - type 2 was generally a later onset.

But, the MDA docs say we are definitely a Type 2 (unknown subtype)

based on NCV tests, and we have multiple family members with onset of

symptoms before age 5. We also have family members who were not

diagnosed until late teens, or into their 20s and 30s. Go figure.

Ruth

[Guest guest]

> Well there goes my theory! LOL

> Long ago I read type 2 hit in the 20s and 30's. That sure was wrong.

>

Hi, all.

In my Type-2 case, I would say I've had this all my life but the

actual diagnosis didn't come until I was 50. In childhood I was

termed " clumsy, " had " growing pains " in my legs, I fell frequently,

and I could never get technically proficient in piano playing because

of joint weakness. In reality it was probably the undiagnosed CMT

causing all that. The diagnosis just helped to explain what had

happened to me all my life and I suspect that's true of a lot of

CMT2'ers. Just my two cents. Carolyn