Hi, I have had CMT since 5 years old and now at 47,find it really strange to walk on shiny and wet ground,.I feel like im going to slip ,.

[Badger65]

Does anyone else get this slipping feeling .Can Vertigo be related to CMT as i get really light headed and dizzylately.My balance is bad enough without this .Also was thinking of claiming DLA now my balance etc is getting worse,what response do we normally get when claiming,thanks.

[bev5985]

yes i am the same on wet ground which is why i always walk with crutches as I do also have problems on uneven ground too and legs just give way. Dont have the vertigo though when walking but do have it when bending head too forward such as washing hair etc

[John1945]

Hello Badger65..... Sorry this 'blog' is so long !

You most certainly have INHERITED Cmt from your birth, with it being passed to you by one of your parents: The professionals call Cmt, by its medical name of, H.M.S.N Hereditary-Motor-Sensory-Neuropathy: This disease causes ongoing / deterioration of your PERIPHERAL (near to the surface) nerves, controlling the SENSORY axon/nerves provide (information to your brain): The MOTOR nerves provide (commands from brain to muscles), and all your muscle functions in the hands, forearms, lower legs, and your feet:

This then leads to foot problems such as high arches (Pes Cavus), and "foot drop", muscle weakness, and fatigue, also problems with your balance, hand function, loss of fine finger dexterity, including loss of normal reflexes: Balance issues are also an ongoing problem:

Your brain transmits electrical impulses/signals to the muscles via your nerves which are wrapped/insulated in myelin sheathing which is damaged and "LEAKS", therefore the impulses/signals received at your muscles are weak, and not a full speed (VELOCITY):

Yes, you will experience difficulties with balance, at any walking movement near water/leaves, entering the sea etc, as your damaged Sensory nerves can only slowly transmit what information you see, and what you feel to your brain, which then again slowly sends an instruction/command to your muscles via your damaged Motor nerves:

There is no cure for this disease, POSITIVE MANAGEMENT is the way forward, recognize / adapt / "show Cmt who is the boss" ! ! !

Regards applying for D.L.A. yes the disease is recognized by D.W.P, but be warned it is an incredibly long process, and you may also be aware that our Government has ordered all existing people in receipt of D.L.A. benefits are to be re-assessed:

[Shazza65]

I was diagnosed aged three following on from my sister who was 20 years older being misdiagnosed for several years. There are 3 out of 4 siblings affected with no trace from my parents. I too am 47 but have always had problems walking on wet, slippy or icy surfaces. I have rencently been given a 4 wheel walker by my Physio as I couldn't balance with crutches. I have to say that although reluctant at first to try it because of the looks you may get or opinions of other people it has transformed my life. I am able to walk around my village to the post office and take short visits to town on my own. Do not be afraid to use walking aids or any other assistance. As John says your symptoms will not get any better, you have to learn to live with them and develop strategies to cope. I do receive DLA but have had it for many years, it pays for my car on motability. I am therefore concerned about being reassessed.

There are organisations that can help you in filling out the application form, try and seek them out as there experience is invaluable. Hope you get on okay.

[John1945 in reply to Shazza65]

Nice one ! Shazza65

This site is GREAT ! as fellow sufferers can take comfort, and share advice which lets them know that they are not alone :

I receive D.L.A. (higher rate) which helps with the 1st class motability Scheme, however my son,(higher rate) and my daughter (middle rate) also have Cmt, and are awaiting with dread, the forthcoming D.L.A. review: I am exempt from this review due to my age of 65+ :

What cruel mental torture our current Con-Dem UK Government is putting its disabled citizens through ? Remember the Ballot Box is coming ! ! !

[Barry52]

SPOT ON-GET IDS AND HIS MOB OUT,I ALWAYS FIND IT BIZARRE THAT THE PM WHOSE LATE CHILD WAS DISABLED COULD SIT BACK AND ALLOW THIS

IN MY SPARE TIME I AM A CASEWORKER FOR AN EX-FORCES CHARITY ,AND SEE HOW THIS CURRENT MOB ARE HURTING EVEN THOSE THAT SERVED ..............