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momofmany
 Post subject: New here
PostPosted: Sat Oct 24, 2009 10:50 pm 
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CMTer

Joined: Sun Oct 18, 2009 12:49 am
Posts: 3
Hello! i am new to the board and just wanted to quickly introduce myself. I actually have HNPP (phenotype is the one that mimics CMT) i was diagnosised with CMT at first, then genetic testing revealed HNPP. i have many symptoms of CMT. I look forward to getting to know some of you here.


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Rhyafire
 Post subject: Re: New here
PostPosted: Sun Oct 25, 2009 12:15 am 
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CMTer
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Joined: Wed Jun 24, 2009 7:58 pm
Posts: 197
Location: Canterbury
I do not have CMT: I have the opposite HNPP PM22 Deletion
Hi Momofmany, lovely to meet you. How many children do you have? I've got 4 lovely boys... all big now (oldest is 25 and youngest is 17). I love being a parent, it's the best thing!
I also have HNPP and am 43. I have quite a nasty type where I'm in a lot of pain all the time and have mobility problems. I was only diagnosed a couple of years ago so still getting used to it. It must have been a shock for you to think you had CMT all this time and then find out it is HNPP. But there are quite a few of us in this great big happy family and everyone is just great.
Looking forward to getting to know you too.
Take care
Rhya :bighug:

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Jackie B
 Post subject: Re: New here
PostPosted: Sun Oct 25, 2009 5:58 am 
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Joined: Tue Nov 11, 2008 6:21 am
Posts: 1652
Location: Rustington.
Name: Jackie
CMT Type: cmt type 1a
Hi welcome. keep posting. :thumbs: :wave:


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SAM
 Post subject: Re: New here
PostPosted: Sun Oct 25, 2009 5:12 pm 
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Joined: Mon Nov 03, 2008 2:39 am
Posts: 5094
Location: Settle, N Yorks
Highscores: 7
Name: Sam
CMT Type: CMT Type 1 (sub type as yet unknown)
Hi mumofmany. Welcome to the forum. Thanks for taking the time to introduce yourself. :bighug:

Keep posting ;)

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Anna77
 Post subject: Re: New here
PostPosted: Wed Oct 28, 2009 12:06 pm 
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Joined: Mon May 11, 2009 9:44 pm
Posts: 754
Location: dorset
I do not have CMT: but my partner (s.j.lewis) has CMT type1a and so does my eldest daughter
:welcome:

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annie
 Post subject: Re: New here
PostPosted: Thu Oct 29, 2009 11:34 am 
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The Dizzy Blonde
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Joined: Sun Jul 19, 2009 4:26 pm
Posts: 571
Location: Burnley, Lancs
Name: Ann Sutcliffe
I do not have CMT: I do not have CMT. My husband and my son both have HNPP
:welcome:


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leafpotter
 Post subject: Re: New here
PostPosted: Mon Nov 02, 2009 12:18 am 
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Joined: Tue Nov 04, 2008 12:17 pm
Posts: 427
Location: Bristol
Name: Jon
CMT Type: HNPP
Hi there MofM, I'm another with hnpp. Welcome to the forum.

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HNPP
Meniere's Disease

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momofmany
 Post subject: Re: New here
PostPosted: Tue Nov 17, 2009 2:06 pm 
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CMTer

Joined: Sun Oct 18, 2009 12:49 am
Posts: 3
Thank you all for the welcome! It is nice to connect with others who experience the same things as I do. I am not textbook at all when it comes to HNPP. It is refreshing to hear that I'm not alone. Actually I think the textbook needs to be changed. ;)
I have 6 children, ages 13,9,7,5,4,1. All boys except the 4 yr old is a girl. Needless to say they kep me busy, but I look forward to getting to know some of you in my spare time.
Blessings!


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SAM
 Post subject: Re: New here
PostPosted: Tue Nov 17, 2009 2:34 pm 
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Site Admin
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Joined: Mon Nov 03, 2008 2:39 am
Posts: 5094
Location: Settle, N Yorks
Highscores: 7
Name: Sam
CMT Type: CMT Type 1 (sub type as yet unknown)
6? :shock: I bet they DO keep you busy :shock:

I agree, that damn text book needs throwing out of the window and starting again, this time written BY us guys :cool: ;)

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Sally
 Post subject: Re: New here
PostPosted: Tue Nov 17, 2009 8:32 pm 
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Super Granny

Joined: Thu Nov 27, 2008 8:38 am
Posts: 1224
Location: Lancashire
CMT Type: HNPP
Welcome :wave:

I am another HNPP person and as you can see there are quite a few of us on here. Great to meet you.

Keep posting, if your 6 children :yikes: give you time. :bighug:

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We can't change life, so laugh at it.

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