is balance disturbance common in (c.m.t) disease

[bawadry]

[Jazzyjoan]

Depends what you mean by balance disturbance really. Physical loss of balance is a big part of CMT due to the loss of muscle etc, but a feeling of loss of balance (vertigo) I'm not sure about. I suffer with vertigo, but whether it is due to CMT or not I don't know. I do know that lost of older people (I'm 66) suffer with vertigo, so maybe it's just something that can come with age. Have a look at this website which has lots of information on the various types of CMT, cmt.org.uk/

[bawadry in reply to Jazzyjoan]

not vertigo but feeling as something push you back or foreward or left or right and in the same time you feel your legs weak or unsteady

[bawadry]

not vertigo but feeling as something push you back or foreward or left or right and in the same time you feel your legs weak or unsteady

[John1945]

Hello to bawadry.....

Most certainly C.M.T. causes most sufferers varying degrees of balance loss :

This is mainly due to your inherited existing, and damaged "MOTOR" nerves, which send command/signals/ instructions FROM > your brain to your receiving muscles, and also your "SENSORY" nerves which send touch/sensory/feelings, information back > TO your brain:

Your existing "MYELIN" sheathing, a "wax-like" substance which wraps around your "Peripheral-Nerves" (means-near to your skin's surfaces), is damaged!

Myelin is meant to provide insulation/containment/strength of the electrical impulses/signals going 'To and from' your brain, via your nerves:

In C.M.T. your "MYELIN SHEATHING IS DAMAGED, AND LEAKS" ! Therefore, the actual signal strength/velocity/slow signal speed is greatly reduced: Over a period of many years this reduced signal strength, in turn will cause your lower limbs / hands muscles to waste away, and particularly in your lower limbs, and in your extremities, (hands and fingers):

When you try to attempt a sudden turn of your body, you can easily overbalance, simply because your electrical signals/reduced/velocity/speed etc 'TO and FROM' your brain, simply "CANNOT KEEP UP TO SPEED" with your intended/instructions/actions:

This is all due, to your brain receiving the, VERY SLOW 'SENSORY' INFORMATION, AND THEN SENDING INSTRUCIONS BACK TO YOUR RECEIVING MUSCLES, VIA YOUR SLOW 'MOTOR' RESPONSES:

THIS IS ALL DUE TO YOUR IHERITED, AND DAMAGED PERIPHERAL NERVOUS SYSTEM"

Best of luck, and enjoy good health ....

John .... (Glasgow)

[Primary-Bursar]

Hi Bawadry

I would say that my loss of balance is one of the major issues I face with my CMT 1A. As John says I cannot respond to having to make a sudden side step for instance. Add to this my foot drop, life is a little challenging at times especially in crowded places. However, with the use of a crutch and a 'foot up' I keep battling on.

Hope this helps.

[gunner in reply to Primary-Bursar]

I also use a walking stick which also helps let people realise I have some sort of problem otherwise people expect you to move out of the way quickly which i can't do.like people on bikes or mobility scooters who some seem to think they can speed along the path and people will move out of the way. I did once have a go at someone saying "your not the only person with a disability you know" I have for as long as i can remember from the age of about 6-7 yrs old I have had balance difficulties often falling over and hurting myself. but now I have knee problems I am far worse now.

[Amanita]

Yes Bawadry, balance problems are certainly part of the CMT package. One of the features of CMT falls, is that due to faulty transmission of nerve signals, your feet can't constantly adjust their position as "normal" people's do, to correct and maintain your balance. Apparently "just" standing is quite a complex activity . I became acutely aware of this problem during choral concerts, and could no longer safely stand to sing, as there was nothing to steady myself on (the seat in front was out of reach on a lower tier) Similarly, taking a photograph or simply chatting to a friend out of doors has become very hazardous indeed if there's nothing to lean on. In the kind of trip caused by catching your toes on a perfectly flat surface, you can find yourself suddenly in a heap on the floor well before the messages have even reached your brain to tell you you to take evasive action. Fortunately, in my case this usually means that I fall in quite a relaxed way and don't try to "save" myself by putting an arm out.

I have recently taken to using a walking pole to help a bit with the balance (as well as to advise people that I have a mobility problem), and ankle supports have virtually eliminated falls caused by drop - foot. But as John 1945 says, you can still very easily overbalance by turning too suddenly.

And uneven ground is absolutely treacherous.

[bawadry in reply to Amanita]

hi Amanita have you know about something like exercises or other improve balance

[Hidden in reply to Amanita]

Hi Amanita, I just read your reply to Bewadry, Interesting that your description fits my symptoms perfectly.

I also read other replies but nothing points to my neurologists diagnosis two weeks ago, he believes my balance problem is due to my wear and tear of my spine. No treatment has been offered so it was all a bit of a waste of time.

[Amanita in reply to Hidden]

Hi, Ulrich,

I wonder how much your neurologist knows about CMT.....With respect, his explanation of your balance problems sounds frankly bizarre to me. I'm sorry you were not referred to a neuro-physiotherapist.

Something which I think has helped my balance a bit is the water exercise class I have been going to for a couple of years. Maybe it builds up ones core strength or something.

But the sensation of standing upright and walking - and now even jumping - without holding on to anything, in armpit-deep water is absolutely wonderful. I should add for honesty's sake it took me a few months (plus a lot of patience and encouragement from the instructor) to gain the confidence to stop clinging to the edge.

It is held at the local Leisure Pool and is known as "The GP Referral Class" (I was referred by a physio) - Maybe there is an equivalent somewhere near you....? I find the friendly company therapeutic too.

[Hidden in reply to Amanita]

I have been reading about wear & tear on the lower spine and it does indeed affect balance. My neurologist seemed to know a great deal about CMT, not that I profess to know a good from a bad neurologist. My spine is a mess, my GP in the USA, asked after seeing x-rays, when did you break you're back.

[Amanita]

That is a very interesting question, Bawadry. I have been given all sorts of exercises by my physiotherapist, including one for balance ( trying to stand with one foot directly in front of and touching the other for as long as possible - a few seconds in my case). But my balance is noticeably and worryingly worse now than it was eighteen months ago,when I was first given the exercise, so I am not convinced it has helped. For a brief period I was given exercises using a sophisticated electronic device called a Wii (I think) Board in an NHS clinic, and improved in my ability to perform those particular exercises, but I don't think there has been any long term good effect. The physiotherapist is now in the process of signing me off, and has referred me to a gym. The balance exercise there consists of standing on a wobbly dome-shaped rubber cushion, but as I couldn't get on to it even while steadying myself by gripping a window sill with my hands (which soon grew tired), that exercise was immediately abandoned!

If I ever come across a balance exercise which doesn't involve an expensive machine, which I can actually do, and which really works, I will let you know!

[bawadry in reply to Amanita]

what your advice to manage balance from your experince

[Dick107]

I've used a hiking pole for balance and it makes a dig difference.

For building muscle (especially upper body core strength) try Nordic walking.

You use two poles which would really help with balance.

There are many videos demonstrating this on YouTube.

One of those is at youtube.com/watch?v=ZKTufkz...(Not working as expected?)

Using special poles will be mentioned, but you can use normal hiking poles but equip them with special tips designed for Nordic walking.

[mia160505]

iv noticed my balance is all over the place , and just recently its got worse to the point i have to hold on to walls or someone so i can wall down the street , if im on my own i have to plan which way to go , im 41 and my cmt has deteriated in the last 2 years years , i work in a school so trying to keep as normal as possible , but iv noticed my legs are getting weeker and i tend to trip more if i walk to far , i also drive with handcontrols , as driving for a long time my legs get very tired ,

[lilybet]

Yes, balance is definitely part of Cmt. I often stagger sideways (that used to raise a smile from my husband bless his heart). I have also fallen outside, wobbled on uneven ground in my own garden, sprained my ankles and lost my balance on the stairs many times. Once I did the splits on the stair (not recommended! Lol). A physiotherapist taught me an exercise where, in a standing position, holding on to a chair, you march slowly with your knees up to hip level and every third leg raise you close your eyes and reopen them after the next 3 leg raises. She told me it's to do with retraining your brain to balance.

[bawadry in reply to lilybet]

it,s seem good exercise have you more or websites links about that

[Jealousone in reply to lilybet]

Hi, I have CMT 2 and are only 48. I began experiencing nerve pain n after 8 months of burning feet I went to a Neurologist whom diagnosed me with CMT. I have the typical foot deformities n I had the electrode test. My balance is all over the place - I have to lean on things n hold onto things for support. I need to sit as my legs dont seem to be able to support me. I use a walking stick - mainly for balance - it's a big help. My neurologist said there's nothing you can do about it - exercises of course but no magic little pill - bummer

Know of any help?