Does anyone have ongoing LOSS of muscle strength: Both legs & their "quads" muscles (Knee to Hip): Any muscle support suggestions welcomed !

[John1945]

I inherited Cmt Type 1A from my father whom had "club-feet" due to a lack of medical knowledge in 30's - 50's : At 17 years 1963 I had successful bone wedge removal surgery to reduce my high arches (pes-cavus) : However, beware as the total recovery times were a long 6 months for each foot ? I was then able to work for 47 years 272 days, of UNBROKEN work service for my single employer, Glasgow City Council:

However, in 1998 my Neurologist told me that my muscles would still SLOWLY, continue to deteriorate, leading to further balance, and walking problems :

He stated, "think of Cmt as if you are going down a flight of stairs very-very SLOWLY, one slow step at a time, downwards to a lower level, you then mangage/adjust the further reduction/deterioration in your overall mobility, later you will take slowly take another step downwards, and once again YOU ! and myou alone, must adjust, and apply a determined POSITIVE/METAL/MANAGEMENT/ADJUSTMENT/ as their is no current cure for Cmt:

Tell Cmt > "Get lost - Iam the boss, and you won't beat me". !

[spabbygirl]

I have that too John, I also have type 1a, as you do. I can pinpoint the exact day 5 years ago when my knees became weaker. I was looking round an old house with a tour guide and I just couldn't stand upright without holding on. I got a walking stick which helped but my knees have never been the same since. I've just got a ankle support to help my foot drop but no-one's ever said anything about weak knees. Your stairs analogy is exactly right for me too, I do adjust to it's new turns in time. Lynne

[PhilC]

Hi John, I am 62 and have CMT1a , like you I have been in continuous emploment.

The loss of upper body strength and weakness in both hands and legs became really noticable about 6 years ago, I found it hard to walk down stairs, stand still and keep my balance on uneven surfaces. I also started to suffer with ED which initially the GP said was unrelated to the CMT but has subsequently been proven to be connected.

I have had custom made insoles and shoes care of the NHS which has kept me mobile and improved my mobility although I still find walking distances very tiring.

To be honest I just try to forget the CMT and carry on with life although I must admit when I struggle to do up a shirt button the air can become a little blue! My biggest problem is fatigue but apart from getting 8 hours sleep per night there isn't much more one can do in that respect.

[Whiterose]

What is ED?

[John1945 in reply to Whiterose]

Whiterose>>>>

E.D. is the shortened medical name for, Erectile Dysfunction!

[Hidden]

I don't know what type of CMT I have but your neurologist has made a good analogy in my experience....my CMT seems to plateau and then gets worse a bit and then plateaus again and has done over the past 20 plus years. From walking (albeit badly) for the better part of 30 years unaided then to a stick for 10-15 years and now a walker, splints and a wheelchair for the last 5. I have some weakness in my hands and shoulders but. touch wood this hasn't dramatically worsened over my lifetime.

Having CMT and dealing with it definitely needs a shift in mindset as it gets worse; in the main its a case of grin and bear it. I have various exercises the physios have given me, both aqua and for home and try to do them regularly just to keep (relatively) limber. They're not especially complicated or hard but I feel the difference if I don't do them for a couple of weeks. Try and get access to a physio if you don't have already and discuss your situation with them (there's a physio called John Dennis at the Victoria who's good and the physios at the PDRU at the Southern are also excellent).

[John1945]

Thank's Guys and Gals, for your welcome response !

Does any fellow sufferer, use cycle compression shorts ? as a means of providing strength, and support to their "quad" muscles ? i.e. "hip to knee" ?

[Amanita]

Hi there, John,

My walking has got noticeably worse in the last year (clumsier, even less energy-efficient, more erratic, feet feeling sort-of heavier and less "in touch"), which I suppose is at least partly attributable to declining muscle strength. As you say, slowly finding myself on the next step down. This Spring, it became harder to take a step up with my weight on my left (otherwise stronger) leg, and lifting R foot. The physiotherapist found a problem lurking, apparently, behind my L.patella, and added yet more exercises to the list I try to do every morning (but being human, don't always manage). If I could descibe them for you unambiguously without drawings, I would certainly do so. They involve stretches to my quads.

Once or twice a week for the last four months, I have been attending a council-run gym, (having been originally referred by the physio., who really is doing her best for me), and spend a few minutes on a cycling machine, a few on a rowing machine, a few doing leg stretches and a few doing exercises on a mat. I am not expecting any improvement, but am hoping for a delay in deterioration.

Can't answer your cycle compression shorts question though - have never heard of them - sorry!

- and I don't know what ED is, either.

[GioGoi]

Hi I also have cmt had since birth I'm 32 now I have lost just about all my muscle and strength in my legs arms back ect I haven't found any way to build my strength and muscles back up all my family has cmt except my older brother it had skipped him .

[John1945 in reply to GioGoi]

Hello to GioGoi .....

Basically your Cmt Disease, (always call it a disease - not a condition), means that your muscles will very SLOWLY continue to waste away, in your remaining lifespan: This is due to the fact that most Cmt sufferers muscles, 'DO NOT' have the basic element within them that would allow you to "build-up", and strengthen them:

The continous, and ongoing loss of your extremely slow "motor" signals, ie >'brain to muscles' , results in your muscles not receiving a strong electric signal to stimulate wasting muscles, and also to tone them : Then over a very long period of time they will contiue to "waste-away", and loose their strength:

However, always keep exercising to your maximum capabilities, as this assists you to retain your general mobility:

Here is the "catch 22" with Cmt Disease ?

1) "Exercise, and you will suffer fatigue !

2) "Don't exercise, and your muscles will get floppy !

Best of luck to you ....

John .... (Glasgow)

[williamalfred]

Hi Sue here (williamalfred) is my dad`s name use it on here........i`ve got CMT TYPE 2, born with it but didn`t know what it was until 1991 when i had tests, my muscles have wasted more over the years and i now have a walking stick and two splints, the strenght in my legs, arms and hands have got much worse fall over a lot and drop things always very tired, physiotherapy doesn `t work, the only thing that seems to help is swimming. My mam and my son have CMT too.