What type of CMT do you have - Charcot-Marie-Too...

Charcot-Marie-Tooth UK

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What type of CMT do you have

CMTUnitedKindom profile imageCMTUnitedKindomPartner212 Voters

Please select one:

31 Replies
CMTerSam profile image
CMTerSamVolunteer

Type 1A here... does that make me "common"? haha!

CMTUnitedKindom profile image
CMTUnitedKindomPartner

Sure does, Sam! Me common too!

CMTerSam profile image
CMTerSamVolunteer

Commoners togeather yay! lol

Alioops78 profile image
Alioops78

CMT 1a here to, always nice to be the commonest of a rare lot lol

Zoe-Leanne profile image
Zoe-Leanne

I dont know which type I have :/ really bugs me how I dont know, I think I could be the mad type! hehe

markiedee82 profile image
markiedee82

im a rare 1 then x-type which is the worst the rare 1s or the commomer 1s

CMTerSam profile image
CMTerSamVolunteer

all the types are pretty variable in severity markiedee82. even members of the same family with the condition can be affected very differently.

markiedee82 profile image
markiedee82

oh , i dont no much about cmt, wots the difference in the types of cmt

CMTerSam profile image
CMTerSamVolunteer

Hi markiedee82....

Take a quick read of the page link below... it quickly summarises the different types of CMT and how they differ.

cmt.org.uk/cmt-classificati...

Just ask if you have any more questions x

markiedee82 profile image
markiedee82 in reply to CMTerSam

thanks very helpful

taybeeb profile image
taybeeb

X linked

DEREKR profile image
DEREKR

I HAVE CMT 1A AS WELL

khalil profile image
khalil

I AM NEW AND I HAVE CMT 1A HI TO EVERY BODY

BrentonButler profile image
BrentonButler

I've been told I'm either 2 or x but they are not sure.

B_Jesson profile image
B_Jesson

I have been told I am type 2 but with the addition of two mitochondrial disorders, the only know case of this occurring

KarenNic profile image
KarenNic

Im type 2 lol this is more fun than trying to explain it to people who have no idea what you're talking about

I was amazed the first time I went into hospital for an operation on my foot that hardly anyone knew what cmt was. I took my book about cmt in with me and had all sorts of people coming to look at it,doctors,nurses ect.

lilybet profile image
lilybet

I was diagnosed with chronic demyelinating neuropathy 30 years ago at the age of 14. But it's only since I did my own online research that I found out about the CMT (label). Think based on symptoms I am cmt1a. Thought I was the only one! Ha. :)

nichola148 profile image
nichola148

Hi all, ive type 1a along with my mother and two brothers one old and one younger. Am I the only person who didnt and hasnt taken the news about this shite illness to well coz thats how I feel x

Amanita profile image
Amanita

Hi there,

I was always rubbish at sport at school, and detested it.Years later I had an unofficial diagnosis of CMT (over 20 years ago now), from someone in a London hospital who was researching its occurence in families ( I had been dragged along there by my aunt). The diagnosis was based just on the appearance of my feet and failure to react to a hammer blow below the knee. I was told only the name of the condition (which I'd never heard of) and the fact that there was no cure - and went away feeling extremely put out, to put it mildly. My aunt seemed to think it was rather special to have a condition that was rare, and interesting to neurologists! I did not share her opinion, and proceded to stuff the whole episode under my psychological carpet, especially as the man who diagnosed me didn't answer the letter I wrote him with the questions I hadn't asked him at the time, because I'd been completely unprepared.

I went on in denial, with everyone just accepting the fact I fell over rather a lot and never asking why, until 18 months ago, when I was sole carer for my husband (older than me), and not coping. I had to face up to my own problems then, but at least I had a name to give the GP a clue. I managed eventually to persuade him that a neurologist might be more helpful than a couple of sessions with the visiting practice physiotherapist. The official diagnosis (type 1A) came about 9 months after my first visit to the neurologist. I am still coming to terms with it all, especially the fact that after all this time I am having to admit openly that I have a disability.

kitbo21 profile image
kitbo21

i have type 5, always thought i had type 2 ? xx

rgeyesl profile image
rgeyesl

I have CMT Type 1A was diagnosed 26 years ago. Slowly it has affected my body and it's now affecting my phrenic nerve en.wikipedia.org/wiki/Phren... and is stopping my diaphragm from working. So I only now breath on my chest muscles and have to use a ventilator at night.

chicodex profile image
chicodex

Type 2 Axonal

Southerngrace profile image
Southerngrace

I have 1b

Kilcocklady profile image
Kilcocklady

I am a female with this type and I have no problem walking but have never been a good runner! I had no obviour symptoms until I was in my early 50's and then I developed MS like symptoms. I had a flare up in 2009 but have been ok since then except for pins and needles. I am on Lyrica for this and it does mask most of the pain. I work full time.

babs profile image
babs

My 7 year old grandson was diagnosed around 3 years ago,type a. He has set exercises to do & has foot/leg splints ,worn for short periods,to help keep his heels on floor. He swims ,plays golf & football ,

has a high pain tolerance, He was born with cleft lip & palate.

diagnosedcmt profile image
diagnosedcmt

so cmt 1a is common and less severe

Abul_Hassan profile image
Abul_Hassan

1A here.

hambuck profile image
hambuck

Cmt 1B here......

beachwine profile image
beachwine

D1C

Was told it has been discovered in one family in North America and one family in Bulgaria. Rare, so I am sure there will be no work for a cure. So sad.

gunner profile image
gunner

Yeah I'm pretty common myself but with a bit of class😏🥂