I am nearing 70 years of age and have had CMT all my life. Mostly I have been able to accept the limitations this placed on me and work around them, but a new one has pounced on me that is causing me real, and serious, concern.
I have been to the GP (our practice sadly does not have anyone with any particular knowledge of CMT...or indeed, any knowledge at all it would seem) so I thought I should come straight to the experts...other people who might know what I am talking about.
The problem started in my ankles, they feel swollen when they are not, they then started to feel numb with loss of feeling or sensation, this is moving slowly upwards in the lower leg and also affects the feet.
I now have the starting of the same sensation of numbness in my wrists, lower arms and shoulders.
Can anyone tell me, firstly, are this symptons consistant with CMT, are they "manageable," ie. with medication and how I should proceed to minimise the problems they are starting to cause me.
The GP has referred me to a specialist but says it could take "a long time"...I don't feel happy waiting a long time when this is progressing too quickly for my liking and so could do with some serious advise.
Any comments would be appreciated.
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Forester
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i have exactly the same symptoms and doctor has referred me to the hospital. this was august last year and am still waiting. just be careful of hot things and watch where you walk barefoot. i have burnt myself a few times and got cuts on my feet.
Hi I also have this happening to me , my feet are numb and it is progressing up my legs, this is nerve damage , at times my feet feel like they are on fire and the pain is really bad, don't walk around with nothing on ur feet as iv broken a few toes and cut my feet , but unfortutly this is the cmt advancing , I hope this is helpful x ☺️
II am 63 and have type 1 cmt and am also type 2 diabetic. So I get a double whammy on the neuropathy front.
I did not really become aware of my problem until about about 10 years ago ( my older sister discovered she had it and I got checked out ).
From my own experience and also from what I have read, I would say your symptoms are about par for the course ( although arriving later than most ).
My symptoms started about 10 years ago.
I do not have any sensation in my feet ( although I can still feel pain ). My balance is appalling. I have a sort of pins and needles sensation in my fingers most of the time. Every now and then I get significant ( but short lived ) pain from nerve endings in my feet and hands. My arm and leg muscles have wasted lots, stairs are difficult, jars and bottles are difficult to open, 10kg is about my max weight to pick up etc.
Charcot-Marie-Tooth Disease, C.M.T. is an hereditary disease and any kids you have will have a 50 50 chance of having it. ( It used to be called hereditary motor sensory neuropathy ).
There are 2 main types.
Type 1 affects the myelin sheathing for the nerves.
Type 2 affects the axions between the nerves.
The affect is about the same.
The nerve signals becomes weaker the further they have to travel so the long nerves ( hands and feet ) get affected first.
When the signals are sufficiently weak, the muscles do not get stimulated properly and begin to waste.
When muscles reach this state then if they are not used they get worse ( use it or lose it ) BUT do to much and damage them by straining them or vigorous exercise then they DO NOT heal and they get worse too.
CMT is progressively worsening disease.
There is no known cure at this time. There is no medication for CMT although pain killers may help.
Light physio may help. OTAGO exercises?
Not surprised your doctor did not know about CMT. It seems most of the medical profession I have been in contact with do not know either.
The one exception being my old consultant who always turned up at least an hour late, said things were as expected and then sent me on my way to book an appointment in a years time. He was no help. I have not seen him for a few years.
Okay...thanks to everyone who has responded...you have confirmed what I pretty well suspected.
I have always known I have CMT but up till now have managed to keep the lid on it to a large extent by refusing to make room for it in my life...seems you can only run that kind of bluff for so long.
My wife and I walk between 3 and 5 miles a day, 5 days a week and we are a bit canny about our diet so I suppose I will just have to let nature take it's course...reluctantly!
I know there is no cure for CMT but I would be very, very interested to hear from anyone who has their own way of managing the issues it raises...any kind of therapy that works for you, any medications that help (the Dr has me on paracetamol twice a day, which is roughly the same as useless)...anyone who has "thought outside the box" as it were, and come up with an unconventional way of reducing the impact on their lives...that I would love to hear about please...
Good luck to all my fellow sufferers...and thanks for your kind advice so far.
I am in the U. S. and have been taking a combination of 3 meds that I absolutely could not make it through a day without them. Ultra (Tramadol) 200mg extended release at night. Gabapentin 600mg 3x daily; Cymbalta 120mg 1x daily at night. It doesn't make my symptoms go away completely but it takes away the jumping, burning pain so I can tolerate being awake and able to make it through a day. It seems to be the combo of the three meds together that works because I've runout of one or the other before and suffered for it.
I would ask the Dr. to extradite your appointment. My Dr often does this for me. You have to shout load, that is what Pr. Mary Reilly told me at my last app with her. We get used to suffering in silence and getting on with it. Make a fuss and SHOUT LOAD. You need help and make sure you get it. You don't deserve to wait. Good luck don't forget, just because they don't understand it, it doesn't mean you should suffer.
The only thing that puzzles me is that the numbness (fairly normal for CMT) in your feet, lower legs and hands "pounced on" you suddenly. I wonder how suddenly ?
CMT officially progresses at a fairly even, slow-ish rate, but i don't think that is the perception of anyone who actually has it ! I suppose when the deterioration reaches the point where we notice something, or find we can't do what we used to, then it certainly feels though we have been precipitated down the next step. Though it is said to progress faster in response to stress, and other bad things in life ( i think that is what has happened to me in the last few years) .
Each of us, while sharing broadly similar deficiencies in various degrees of severity, will have very different experiences of our CMT. I remember as a child wondering how on earth blind people can possibly feel all those tiny little raised dots, and coming to the conclusion that they must develop super-sensitive fingertips. Of course nobody knew about CMT then.
I think if you are managing daily walks of up to five miles approaching the age of 70, then you are doing really well physically, as well as benefitting from being out of doors and having the companionship of your wife.
Ideally you should see a neurologist at least once a year. I hope you find your consultant knowledgeable and helpful - when you eventually get to see one.
I think - to be truthful - it has been less of a pounce and more of an evolution...the difficulties have been there, and increasingly so, for some time...I am just an extremely stubborn man and have managed to put them to the back of my mind and get on with life until recently when the ankle numbness reached a stage where it could no longer be ignored.
The problem is that, once you have allowed yourself to examine the issue, you can no longer pretend it doesn't exist...making an appointment and going to the Dr gives it more substance and it is the reality that suddenly pounces on you, not the condition.
My stubbornness is a great asset now because I will not allow this to interfere with our walks (at least, that's what I tell myself) and I have the extra strength of a very supportive wife...which helps enormously.
I know this is going to sound odd, but I came on here to establish that this was, in fact, CMT and not some other mysterious affliction that crept up on me...and in a way I am glad to confirm that it does seem to be CMT.
I can cope with that...I have always had it and it is an old and known enemy...a new enemy might have been harder to deal with....better the devil you know, if you see what I mean.
I am very grateful to all the people who have responded to me .
Totally agree with all you've said. And I also consider myself quite stubborn. I'll just keep moving as long as I'm able. Haha, I HAVE learned though I DO need to stop every so often and rest. I used to spend all day on my feet, first sitting down when I finished serving dinner to my family. Now I realize I must sit a short period of time a least once an hour. Wish I'd fifured that one out a long time ago. I've spent many a night in absolute 10/10 (pain scale) after crawling into bed. Not good!
I had an unofficial CMT diagnosis after a very cursory examination about 30 years ago (it's a long story) and was simply told the name, that it caused slow transmission of nerve signals, that it would get worse and that there was no cure.
After my initial reaction (I felt quite upset- but at the same time realised it could possibly explain why I had always been so abysmally bad at anything sporty and fell rather a lot) I decided to bury the whole beastly thing deep under my psychological carpet. Superficially I "forgot" about it until a few years ago, when I was physically unable to do what life was demanding of me. That was when at long last I went to my GP and persuaded him to refer me to a neurologist , and eventually an official diagnosis of CMT followed.
I am still coming to terms with my poor mobility, needing to use a crutch (sometimes 2) in public, displaying a Blue Badge , and having to request assistance e.g. when needing to carry a tray (=impossible) in a cafeteria.
I certainly know about pretending it isn't happening - until circumstances eventually force you to face up to reality ! Meanwhile some of my happiest memories are of country walks with my husband.
We have walked a similar path, you and I, though I think you are a little further along it than I am. I have some odd moments when I feel angry, or even a little bitter, about CMT...but mostly I am fairly philosophical about it...I firmly believe that what life deprives you of in one way, it compensates you for in others, and I am still able to build my memory bank with our walks in The New Forest on a daily basis.
I have never been able to run, so I have always walked, I could never jump over, so I found ways around obstacles...and it has helped to build the character I now am (which I think is a pretty balanced kind of individual)
Reality can a bit brutal, especially physical reality, but I think that (in my case anyway, and I suspect in yours) the years of keeping the reality of CMT on the back burner have served to increase mental resilience beyond normal proportions...at least CMT will not affect your mind...or mine...and in there we can be as free as birds in the sky.
I got rather concerned about this latest turn of events regarding "wooden ankles" but perversely I have been strengthened by having it confirmed as CMT...it's almost a relief...
Stay strong...and CMT will never win.
(I hesitated before adding this bit but...when we go walking in the forest, we take cameras and video everything that takes our interest...I then edit the clips, add titles, music and comment (occasionally) and make 1/2 hour videos which I then share on Google Drive with friends and relatives scattered around the world.
If you think you might enjoy some of them I would be happy to add you to the list. All you need do is give me an email address for Drive (maybe its possible to send a private message on this forum, I'm not sure).
If you can no longer walk in the country for yourself, at least you could share some of our pleasure.
My Father has CMT and has problems walking but he has found a product called FOOTUPS which helped him, he spoke to our local Hospital Physiotherapy Dept and they now use this product for people with similar problems to Dad where the muscles in their legs have weakened and they have difficulty lifting their feet to walk. Just a suggestion for you to look at as it may be of some assistance to yourself,
Interesting...I take photographs on my walks feeling that some day if I'm unable to walk I will paint the scenes i have photographed. I've been doing this for some time. Long before I had any thought that I might have MCT syndrome.
Hi all, l was diagnosed with Cmt 4 years ago when l was 62, so quite fortunate in that respect. I have now lost key functioning to my ankles and walking has become difficult. My symptoms are similar to Forresters but possible not quite so bad.
I swim a lot and am still managing to cycle locally. I was always very active so its been difficult to slow down. How much exercise to do is a difficult one for me, as we know the fatigue can be a real issue, so what is too much or too little? No one seems to be able to answer that one! I have been told by those who should know, that exercising to vigorously will cause fatigue but not speed up the progression. I do find regular exercise beneficial so that will continue.
Since diagnosis l have come to terms with the disability and in some ways it has changed me for the better and l continue to enjoy my life and accept the restrictions.
The lack of awareness of cmt l am finding difficult and like the rest of you can get frustrated by this lack of awareness in all areas, medical, social included. I am in the process of putting together a raise awareness film with the support of cmt uk, it is early days but l am determined to get this film made and will keep you all posted.
I am astonished - and a little bit shocked - at how many people are affected by this affliction.
I am also heartened and impressed to read that, almost without exception, people with CMT have the strength to deal with the day-to-day difficulties of living with it, and get on with the rest of their lives.
We may share a genetic weakness between us, but we also share an exceptional degree of mental strength...it makes me proud to meet you all.
Interesting, in my research I found a study (1978) of a family in Ontario who had both MCT and Hereditary angioedema. I am American, my relatives hail from both Ireland and Scotland. Many of my Scottish relatives moved to Ontario. All very interesting.
Interested to hear about the film in progress.... although my wife and I make loads of films throughout the year on our walks through The New Forest I don't think I could contribute much in that respect.
However, I have, for may years, been a rustic poet ( I have sold poetry all over the world on the internet) and I wrote a poem about my experiences with CMT...based on acidic humour...which was published a few years ago by the American CMT Association and well received there.
If you feel there is any way in which the poem may help in your endeavour I would be more than happy to send it to you for use in anyway you felt helpful.
Hi Forester, thanks for your kind offer of the poetry and the films, both of which l'd love to see and read if you don't mind sending me links to both. I write poetry but have only managed one re cmt so far.
The film when made, will be short, humorous and accessible to all, from medical practitioners to the general public. I will keep you posted as it progresses, still in the planning stage at the moment.
I am about to join CMT Uk who are actually based just a couple of miles from me...up until very recently (like two weeks ago) I have done my best to ignore CMT and everything to do with it... but even the most determined Ostrich has to lift his head out of the sand eventually.
I have placed the poem on GoogleDrive and below is a link to it (which I hope will work...I'm not too hot on this techno stuff)
Please let me know if it doesn't.
The films you are more than welcome to share...to date though, there are in excess of 400 of them (we reckon to do roughly 1 half-hour film per week) so what I will do is include a link for the latest one...if you enjoy that we can sort out some more for you...but 400 in one go is a bit much even for an enthusiast.
This one does include a few shots of our own garden but most of them are what we see on our journeys through the forest...either on foot or in the car.
Hi Forester, managed to read your poem, which was really good and very personal but in some ways universal for those of us with cmt. Couldn't download the film though. Best wishes
I have used a foot up on my right foot since diagnosis which was just over 3 years ago but after a recent visit to the orthotist I now have one for my left foot too. They definitely help with my walking as they make me more stable although I also use a crutch to aid my balance.
I've had a look at them and they seem very interesting...stability being a major issue with me (which is not very helpful when you are trying to use a video-camera)
I do have a section of other issues which complicate matters though, so I am going to have to seek advice before I try them...I have visit to the local orthotics department pending...at least I can go armed with sensible questions...
I have just looked at, and enjoyed, your assemblage of images. They remind me of the good old days when I could walk 3 or 4 miles on country footpaths. Now it's down to about a hundred metres or so on even ground, at about 30m a minute.
It's nice to make the acquaintance of a keen gardener, too. I love plants (and some of their six-legged visitors as well) , and can still manage a bit of genteel weeding and pottering in my greenhouse. If my neighbour pulls the starter, I can even mow the lawn, with the mower (at a slow speed) acting as a kind of self-propelled walking aid.
I hope you find your orthotist helpful, and with a knowledge of CMT. He/she will watch how you walk, and probably test the range of movement in your ankles. It should be helpful if you have your own list of questions/concerns. From what I understand, foot-ups are OK for foot-drop, but don't do anything for unstable ankles or a tendency to walk on the outer edges of ones feet. Depends on the effects CMT has on you as an individual.
Well the thing about gardening is that it is a job best done at your own pace...pottering is good...(should be compulsory actually)...and I speak as a contract gardener of many years experience...it is one of the few places where your way is always the right way...I hope you continue to enjoy gardening for many years to come..
We encourage most little visitors to the garden...birds, hedgehogs (we have three at the moment) insects of all kinds...we have tried really hard to attract Bees and Butterflies recently...with some spectacular results...the only ones who are not welcome are Squirrels, Pigeons and cats...there are just too many of them.
That particular video contained less of the Forest than they usually do, but still enough to give the flavour of how we spend our days...if you fancy walking with us through the woods every now and then I would be happy to send you another link...we have a good many to choose from.
I did see a neurologist at the hospital a few years ago who was pretty clued-up on CMT...if he is still there I should be okay...but in any event, it seems like it could be a long wait.
I looked at the Foot-Ups and decided against them for several reasons...one being the difficulty I already have in putting my foot-ware on...that's a major struggle as it is...I can't see them making it any easier, and I don't think - as you point out - they are especially relevant to my issues.. Nice of people to come forward with suggestions though.
Just getting workrd up for MCT. Have all the symptoms. Had the pes caves (high arch) so much so kids in gym class in high school would comment about my silly looking feet. Have a son with the same. Always a bit clumsy regarding feet. Fell down stairs at school when I was 12..broke my hand that I had extended to break my fall. Teacher/school nurse comment was "you should have picked up your feet when walking down the stairs". Will never forget that insensitive comment (now 65 years old). Have had many broken toes, cuts, gashes. Didn't start putting things together until recently. About 10+ years ago developed neuropathy of both feet...feel like I'm standing on the hood of a car with the motor running. It's gotten increasingly worse. When it first began i blamed it on the bunions I have on both feet - another source of pain. I'm also followed for Hereditary Angioedema which causes swelling in feet, legs, hands, face, belly and trachea. My mom had same symptoms associated with HAE but also had severe pain in feet and legs. She also had severe scoliosis which actually took her life as she had restrictive lung disease due to the mishapen rib cage and it's restriction on her lungs. She spent the last 6 months of her life sitting up in a lounge chair finding this the only comfortable way she could breath. She died in that same chair. I have a mild scoliosis as do cousins and my own children, I understand that scoliosis can be part of the MCT syndrome. What I've learned on my own over the years is Number One, to keep moving. Yoga has become a mainstay. I've never been able to run but enjoy walking, biking, water walking in a pool, gardening and landscaping. I've learned that sitting for long periods (over 30-40 minutes) is bad for me. I've learned to get up, stretch, do some yoga moves. I vary tasks to alternate between sitting, standing etc. Compression clothes make me feel at my best probably due to the support to muscles and joints and keeping edema down. Ice has become my friend...when my feet are particularly painful I have actually taken a quick walk across a snow covered lawn. I stand on the cool tiles in my bathroom in the middle of the night. Sometimes I have to fill the tub with cold water and submerse my feet and legs. I also have learned to do deep muscle massage as well as lymphedema massage which is helpful in reducing swelling (more due to HAE). I use arnica oil. It reduces pain as well. I also have a prescription for pain medication which I use when all else fails. The trick is to attend to the pain early on instead of allowing the pain to get way ahead of you. I have 6 children...that's six pregnancies on painful feet, a lot of being on my feet as a mom and also have been a registered nurse for 40 years...again a lot of being on my feet and often no time to be able to attend to painful feet. I wear the best running/walking shoes I can find. I've bought many that in the end didn't work out. I continue to experiment with orthotics which help. I also wear ankle braces when my ankles feel particularly painful or weak. All of this I've learned on my own through experimentation. It's what works for me. I also have learned that acute muscle spasms are another symptom of this syndrome..another thing i have suffered from over the years..most recently being so severe on a night that I feared going to sleep the next night that they might return. The spasms went down the whole inner leg from groin to toes. i was paralyse in that any movement made the pain and spasm worse. I stretch pretty much daily but nothing seems to help. If anyone has an answer to that I'd greatly appreciate some ideas. Thanks in advance.
Hi there, from what I've learned, CMT is a slowly progressing disease. If you are noticing quickly progressing symptoms I strongly encourage you to seek more evaluation. There are other very serious diseases that have similar symptoms. Best wishes to you!
Forester, I shuffled around from one doctor to another. Finally my primary care doctor said "I'm sending you to the state University". My 1st appointment was with a wonderful neurologist. After about a 45 minute interview & examination of my feet. She watched me try to stand on my toes & then heels then walk across the room. She said you have Charcot Marie Tooth disease. Huh? She told my husband & me to go for lunch & be back a couple of hours later. They did a nerve conduction test & EMG. I talked with the doctor again discussing the results of those 2 tests. She ordered the genetic test & sent me to an orthodics company with a prescription to have orthotics & AFOs made. Wow, busy day, but worth the 100 Mile drive & the day spent there. I later found out the University of Florida is a Center of Excellence for CMT. I knew I wasn't crazy so in a strange way I was happy to finally know what was wrong with me. I hate the disease but at least I know what I am fighting. Bottom line; keep trying until you find the right doctor. I've also been through several rounds of physical therapy. Now all my doctor's; gastro, dentist etc. know about CMT. I even had one doctor who asked if he could take pictures of my feet to show his residents at the hospital if they could tell by looking what it was (hammertoes & high arch). Good luck.
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