Posts - Charcot-Marie-Tooth UK | HealthUnlocked

Charcot-Marie-Tooth UK

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Men’s health

Ii have had cmt for over past twelve with declining ankle and hand strength - very much in hands wherein I am having trouble masturbating. I am single and...

Ii have had cmt for over past twelve with declining ankle and hand strength - v...

Gettinghard

•2 months ago

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worth a read

Good evening all. As a CMT 1a from birth but not diagnosed until mid 40s.. Had both ankles realigned and one rebuilt, taking painkillers until they come out...

Good evening all. As a CMT 1a from birth but not diagnosed until mid 40s.. Ha...

Need-a-stick

•10 months ago

1 Reply

Useless pain management🤦🏻‍♂️

I received a letter from my pain clinic today because I didn’t feel comfortable doing there online program because of anxiety and dont see how an online zoom...

I received a letter from my pain clinic today because I didn’t feel comfortable ...

Watk123

•10 months ago

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Membership Reimagined - Benefits of being a member

Unlimited access to the CMTUK Helpline Support from trained staff offering factual, practical, and emotional support. We never rush a call as we know...

Unlimited access to the CMTUK Helpline Support from trained staff offering fact...

CMTUnitedKindom

Partner•1 year ago

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Does it sound like cmt or a neurodegenerative desease? My health anxiety is driving me crazy. Please help.

Hello everybody, I truly hope you’re doing alright. I thank you so much for your availability. I truly apologize for writing this much, but really, my...

Hello everybody, I truly hope you’re doing alright. I thank you so much for your...

Cupcakelover23

•2 years ago

3 Replies

Husband passed away

My husband had cmt and he died unexpectedly at age 44. In August went to the doctor said it all looked good he said his breathing. Was off has been all...

My husband had cmt and he died unexpectedly at age 44. In August went to the d...

Skenyon1986

•2 years ago

5 Replies

Experience with stroke and CMT

Hi all Recently (a couple of months ago) I had a TIA. Since then I've been experiencing a lot of fatigues and generally running out of energy - the whole...

Hi all Recently (a couple of months ago) I had a TIA. Since then I've been exp...

Exhausted101

•2 years ago

1 Reply

CMT and Heart Problems

Has anyone had trouble with their heart rate and thinks it may be related to having CMT? If so what type of heart problem are you experiencing?

Has anyone had trouble with their heart rate and thinks it may be related to hav...

123lainie

•2 years ago

6 Replies

Help with CMT.

Good morning to our fellow CMTer. I would like to introduce the team here at CMTUK. I am the information and Support Advisor and apart from all the training I...

Good morning to our fellow CMTer. I would like to introduce the team here at CM...

CMTUnitedKindom

Partner•2 years ago

5 Replies

Pip review

I’ve just asked for a early pop review has I know my cmt is getting worse I cannot stand for long periods of time and walk very far I get high rate care and...

I’ve just asked for a early pop review has I know my cmt is getting worse I cann...

Megan23

•2 years ago

4 Replies

Cmt type 1

Hey i have cmt type 1 im currently taking lamotrigine 200mg morning and night plus butec 5mg does anyone know any herbal stuff ect to help with pain or...

Hey i have cmt type 1 im currently taking lamotrigine 200mg morning and night pl...

Watk123

•3 years ago

2 Replies

DVLA (Drivers' Medical Group) - problems and delays

When I applied to renew my driving licence in 2019, it expired while the DVLA was processing it. Under Section 88 of the Road Traffic Act , we can continue to...

When I applied to renew my driving licence in 2019, it expired while the DVLA wa...

Amanita

•3 years ago

8 Replies

Doing the best with what we have

I've really enjoyed reading some of these posts written by people that deal with CMT and overcoming obstacles. You all are very courageous and I admire you...

I've really enjoyed reading some of these posts written by people that deal with...

Samson360

•3 years ago

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My Life with CMT type 1a

So I thought it was time to give a little bit about living with CMT. My mother noticed that at about eight or nine years old that I was walking differently and...

So I thought it was time to give a little bit about living with CMT. My mother n...

Samson360

•3 years ago

14 Replies

Looking for advice

My son is 3 and his dad has cmt type 1a My son has all the signs like his dad just not the Pes cavus but his physio said kids don’t get a arch in the foot...

My son is 3 and his dad has cmt type 1a My son has all the signs like his dad ...

Carlyb4133

•3 years ago

3 Replies

Input from American RN

Am 85, late onset CMT. Several years ago began breaking bones (balance problem) and was diagnosed. Have several other med. problems as well. The worst thing...

Am 85, late onset CMT. Several years ago began breaking bones (balance problem) ...

esereht

•3 years ago

4 Replies

Edema and C M T

Anyone with CMT getting edema in the feet and legs ? How are you managing it.

Hidden

•3 years ago

3 Replies

I have CMT

I have CMT and I have two sons and both of them have CMT.

jeanangel

•3 years ago

1 Reply

AN/CMT

Hello all, I have CMT & also have an Acoustic Neuroma. Do any of my fellow CMT'ers out there have a Acoustic Neuroma? Maybe I'm the odd one out.

Hello all, I have CMT & also have an Acoustic Neuroma. Do any of my fellow CMT...

handmaid

•3 years ago

2 Replies

need exercise program after heart attack but disabled cant find a book on this.

hello I had a heart attack on the 10th July I am disabled in a wheelchair, I have the following arthritis in both knees, both knees need replacing,...

hello I had a heart attack on the 10th July I am disabled in a wheelchair, I ha...

microbar

•3 years ago

3 Replies

CMT and Marijuana.

Hi, Male 70 CMT . Has anyone tried medical marijuana to ease nerve pain ? I would like to know how you take it and it’s success rate. Thanks

Hi, Male 70 CMT . Has anyone tried medical marijuana to ease nerve pain ? I wo...

Hidden

•3 years ago

10 Replies

anyone else ?

Hello, I have very mild type 1a and am wondering if this is a symptom. Over the past 2 weeks my left leg dorsiflex muscles have been feeling strange. It isa...

Hello, I have very mild type 1a and am wondering if this is a symptom. Over th...

Hidden

•4 years ago

4 Replies

HNPP & CMT?

Hi i have HNPP with CMT1-1REP has anyone else got. hereditary motor sensory neuropathy with liability to pressure palsy... ?

Hi i have HNPP with CMT1-1REP has anyone else got. hereditary motor sensory neur...

Kaykhellstar

•4 years ago

1 Reply

Trainers

Thank you to whoever recommended new balance trainers, I brought some and they are great even without my orthotics Cheryl

Thank you to whoever recommended new balance trainers, I brought some and they a...

Citylife1

•4 years ago

8 Replies

Hypermobility and CMT

Hi All. I wondered if any of you have hypermobility? My daughter is now 35 and has fall badly 3 times in 2 years. My father had CMT but I didn’t find this...

Hi All. I wondered if any of you have hypermobility? My daughter is now 35 an...

JollyJ

•4 years ago

9 Replies

How do u live?

With disease?

cromar

•4 years ago

4 Replies

High Cholesterol

Does anyone here tried statins and after having problems with my feet and hands I changed to ezetemibe. Has anyone been using ezetemibe for Ling term ? Or...

Does anyone here tried statins and after having problems with my feet and hands ...

Dannyl76

•4 years ago

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Covid vaccine

Hi I'm just wondering if any research has been done on if the vaccine can affect us with CMT. I also have found I've had severe allergic reactions to things...

Hi I'm just wondering if any research has been done on if the vaccine can affect...

Ladywonder

•4 years ago

3 Replies

Please help who has knowledge

Has anyone have sensorimotor Axonal polyneuropathy of large fibers.If someone knows leading MD s in world for this diagnose,and any innovative treatments...

Has anyone have sensorimotor Axonal polyneuropathy of large fibers.If someone kn...

cromar

•4 years ago

2 Replies

Trainers and sandals

Hi Can anybody give me advice on best trainers and sandals for charcot foot. I have Asics which are great with my orthotics but would like a change now and...

Hi Can anybody give me advice on best trainers and sandals for charcot foot. I ...

Citylife1

•4 years ago

8 Replies

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Posts - Charcot-Marie-Tooth UK | HealthUnlocked

Charcot-Marie-Tooth UK

Men’s health

worth a read

Useless pain management🤦🏻‍♂️

Membership Reimagined - Benefits of being a member

Does it sound like cmt or a neurodegenerative desease? My health anxiety is driving me crazy. Please help.

Husband passed away

Experience with stroke and CMT

CMT and Heart Problems

Help with CMT.

Pip review

Cmt type 1

DVLA (Drivers' Medical Group) - problems and delays

Doing the best with what we have

My Life with CMT type 1a

Looking for advice

Input from American RN

Edema and C M T

I have CMT

AN/CMT

need exercise program after heart attack but disabled cant find a book on this.

CMT and Marijuana.

anyone else ?

HNPP & CMT?

Trainers

Hypermobility and CMT

How do u live?

High Cholesterol

Covid vaccine

Please help who has knowledge

Trainers and sandals

Search posts

Pinned Posts

Latest poll

What type of CMT do you have

Archive