Like most other people with CMT (1A) i have feet and legs that are cold to the touch all of the year. My podiatrist frequently checks to see I have a good pulse and circulation in both feel and legs (something my GP has never checked in the past 25 years!).
Recently the skin on my torso is also cold to the touch and when I get out of the shower I get intense itching of the skin which lasts for several minutes until I am dressed and "warmed up".
If you google the symptoms you come up a host of possible causes some of which are dire, just wondered if anyone else has had or has similar?
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PhilC
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I have inherited, from my father, CMT Type 1A, since my birth 69 years ago, however in those "early" days the medical professionals, treated it as an orthopaedic defect !
"Oh I see you have a funny feet, and a strange walking gait" ? "Don't YOU worry we will "rush-in", and carry out major bone surgery, (osteotomy), or tendon transplant, including muscle repositioning, and possibly fixation of all toe joints, and we will sort you out" ? ? ?
They also forgot to tell me that it would take me 1 year to recover from the operations:
Little did they, and myself not realise then, that despite following any corrective orthopaedic procedure's, sufferer's of CMT disease, >>>
WILL STILL CONTINUE WITH THEIR MUSCLE(s) WASTING FOR THE REMAINDER OF THEIR LIFESPAN !
Phil, I also have Diabetes Type 2, who's symptoms are not unlike some of CMT's symptoms:
Examples are > a loss of sensations/feelings in your body's extremities - toes - feet - fingers - poor circulation - loss of 'fine-finger-dexterity' - slow reflex/reactions to touching hot water - numbness etc, in the lower limbs etc:
Your podiatrist is not the right medical professional to consult !
My Neurologist agreed with my opinion, and reminded me + my G.P. (in-writing), that both diseases would require in future to be treated with "more-vigour" (healthy physical or, mental energy, or power, and vitality):
Following this my G.P. arranged for my annual diabetic screening check to be reduced, to a six monthly screening, where all bloods - urine - weight - medication etc, are all medically reviewed: Also 3 - 4 times a year I get my foot pulse, called the (Dorsalis pedis pulse) located on top of both feet, checked, in case my blood/nerves are continuing to deteriorate, causing me further blood circulation, and medical problems !
Best of luck to you PhilC, keep fighting:
Tell Cmt to "get-lost, as simply you ain't gonna beat me ! ! !
I am 64 and has experienced a big change in my body , Peripheral Neuropathy for which I take Lyrica which is turning me into a Zombie. Leg , Arm muscles atrophied alot : Numbness in my feet which are very weak and unsteady so must walk with a cane and even then I'm very unstable . For me the most important aspect of my life is to stay positive and laugh a lot ( comedies, jokes , pranks etc ) Be strong --- better than to be dead ?
Hi Phil, I can understand where you are coming from as I have another puzzle. Does CMT affect your hearing? My doctor could not see anything in the history of CMT, but if it affects the nervous system then why not your hearing? I have suffered from tinitus for years but got more intense over the past few years, also both ear drums are perforated.
Since 2010 I have also had a progressively slow loss of hearing in my left ear, which is now assisted by an NHS digital hearing aid, which in turn is backed-up, by a team of NHS Audiologists, and "Drop-In" Clinics:
However, I am not qualified to answer your medical enquiry: CMT is usually only associated with, and causes damage to your "Peripheral Nervous System" (i.e nerves that are situated just below, and near to your skins surface) :
Your peripheral nerves are all sited, OUTSIDE/OUTWITH your main "Central Nervous System", which is contained, located, and protected within your brain, and your spinal column:
Perhaps your G.P. should refer you the correct medical professional, called a Consultant Neurologist: Their opinion and diagnosis should be sought ?
They would conduct a, Physical examination / Check all your normal reflex points / Nerve conduction test to measure the actual velocity/speed, of your Peripheral Nerves, and your 'SENSORY' Nerve's, (touch-feelings-sensations-ijnformation etc) which sends electrical 'wave-pulse' signal TO>>>YOUR brain:
Your brain then responds to these information signals, by sending a "Command" instruction via an electrical wave pulse signal, via your 'MOTOR' nerves back to the appropriate muscle group: The Neurologist's diagnosis would reveal if you do have Cmt, and also which "sub-group", that you may have Cmt Type 1A -Type2 etc"
That is incorrect, peripheral neuropathy affects all your nerves outside you brain and spinal column, and the jury is out on the brain yet,, and yes CMT can affect the nerves in the ear, as I have nerve deafness and it can affect your breathing, my Phrenic nerve is affected and so on, if you google "CMT and symptom" eg ear etc the published medical articles will come up for these things..
I had a similar thing, I got dizzy and had trouble with my eyesight, dr's said it was an inflamed optic nerve. It was just like having a bit of vaseline on my glasses, not all the time but just sometimes. My consultant said it was nothin to do with CMT. He left and we got a new consultant who said he has just written a paper on this cos CMT affects the myelin part of the nerve and we have myelin in our brains so he reckoned it was caused by CMT.
Its helpful to know, but they still can't do anything about it.
Peripheral neuropathy affects all your nerves outside you brain and spinal column, and the jury is out on the brain yet,, and yes CMT can affect the nerves in the ear, as I have nerve deafness and it can affect your breathing, my Phrenic nerve is affected and so on, if you google "CMT and symptom" eg ear etc the published medical articles will come up for these things.. I have CMT 1A
I have always had itching on the front of my body for as long as I can remember. I get tingling all over quite often if I need the toilet. Shooting pains can be anywhere and can be very painful. All really weird I think.
I have never heard of your symptoms being due to CMT ?
Since 2010 I have had a progressively slow loss of hearing in my left ear, which is now assisted by an NHS digital hearing aid, which in turn is backed-up, by a team of NHS Audiologists, and "Drop-In" Clinics:
However, I am not qualified to answer your medical enquiry: CMT is usually only associated with, and causes damage to your "Peripheral Nervous System" (i.e nerves that are situated just below, and near to your skins surface) :
Your peripheral neves are OUTSIDE/OUTWITH your main "Central Nervous System", which is contained, located, and protected within your brain, and by your spinal column:
Perhaps a medical professionals i.e. a Consultant Neurologist's, opinion/diagnosis should be sought, via your own G.P. ? ? ?
Thanks for your reply. I've been having a lot of trouble walking since April. Really bad pain at the top of my leg and I could hardly pick my foot up. I had foot drop before a long time ago. Came on when I was walking my daughter to school. It was so sudden I nearly fell over.took me an hour to get home instead of 10 miniutes. After that I was never able to walk quickly again. I had a struggle to get the doctor to get me a hospital appointment with the neurologist. Then I had tests and he said I had CMT but didn't know what sort. He discharged me and that was that. I've had 2 ankle operations because of my foot turning in and have 2 false knees, bent fingers and a bent albow. My mum had it as well. Very high arches and couldn't walk in the end. I can't put things in high cupboards because I've no strength I my arms and poor balance. Doe this sound like CMT ? I'm confused.
I think that sounds like CMT strawberry shortcake, your neurologist should have arranged a blood test to see what type & referred you to genetics to help you understand how it may be inherited by family. I am the 1st to have it in my family as the gene became faulty at conception, known as a new mutation. I have CMT 1A which used to be thought of as only affecting hands and feet, the peripheral nerves, but increasingly often neurologists such as my own, Benjamin Wakerly, believe because we have myelin elsewhere in the body other parts can be affected, hence I have optic neuritis which blurs my vision and I am also being investigated for problems with my voice, which may be due to poor nerve function.
I was just about to respond to your enquired when I noticed that you posted it 7 years ago…… sorry for late reply but here we go:
I have CMT type 1 X linked, 57 years. I don’t have any problems with torso temperature, just the usual, permanent, cold legs and hands. Personally speaking, I don’t believe that I have any more problems with itching than anyone else, but that is just my experience.
Whilst here I would like to have a moan about the CMT organisation that I tried to join to be able to discuss how this condition is slowly but surely wrecking my peripheral limbs, fingers and toes, giving me high levels of pain, multiple operations and not far away from putting me in a mobility scooter. Unbelievably, they want to charge me to be able to talk to other people afflicted with this condition, what is this supposed charity of sorts all about?? On their web page I saw them having some grand meeting, somewhere exotic sounding, where all these highly paid (no proof of that!) professionals can get together and talk about the afflicted over a few cocktails………. Sorry for the rant but it incensed me that they would want money from people, whose ability to earn has been severely effected by CMT, just to be able to communicate with others who are living with this.
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DVLA (Drivers' Medical Group) - problems and delays 
UPDATE - MY REPLY TO MEMAMBE
UPDATE
Is chronic pain in yor arms,legs and back normal when you are trying to sleep? I haven't slept poroperly in a week, PLEASE HELP someone!
Does anyone with CMT have problems with eye sight??