Those affected by Charcot-Marie-Tooth disease often display distinct physical symptoms that manifest in their feet. A basic overview of CMT foot symptoms that can be found below.
High Arches and Clawfoot:
The classic, very high arch is formed because the peroneal group no longer properly opposes the tibial muscles. Muscles need to be balanced. The tibial muscles get “free reign” and work without an opposing balance. This results in a pulled up arch, tipping the foot outwards, which creates instability, tiredness, and can lead to ankle sprains.
Motor weakness is the hallmark of CMT and is the cause for clawfeet. The ankle dorsiflexors, the muscles that lift up the foot and ankle, are frequently involved. When the Tibialis Anterior muscle weakens, the foot begins to drop down. This is usually a gradual process, occurring over months or years.
Treatment for Clawfoot
It is very important to keep the Achilles tendon in the calf stretched out. Keeping the Achilles limber can keep a person walking normally for a long time. Stretch the tendon for 60 seconds 3 times each day. There are several stretching programs available, but the easiest and best is to place the front of the foot on a step and let the heel hang over the edge (hold on to the railing to keep your balance).
In more advanced cases, a brace may be required. There are several types available, which are generically called Ankle Foot Orthoses (AFOs). An Orthotist or certified Pedorthist are the professionals who fabricate such braces.
Deformity of the Toes
Deformity of the toes occurs frequently in people that have CMT. An imbalance of muscle pull on the toes causes them to deform. The term “clawing” is used because each toe develops a fixed flexion contracture in the shape of a claw. The contracted toes do not have enough room in shoes and put increased pressure on the ball of the foot, which becomes painful and callused.
Treatment for Deformity of the Toes
While there is nothing one can do to prevent the muscle imbalance, the contractures can be avoided, or at least delayed. Twice a day, once in the morning and once before bedtime, stretch each of the toe joints. Flex down the joint at the base of each toe (Metatarsalphalangeal joint) as far as possible while bringing the middle joint (Proximal Interphalangeal joint) to a straight position. Hold for thirty seconds and then go onto the next toe.
Once a contracture develops, make sure to wear shoes that have a wide toe box to minimize pressure on the toes. A shoe repair shop can stretch out your normal shoes or special wide toe-box shoes can be purchased. Your shoes should have a cushioned sole and be made of a soft, stretchable upper material. A custom orthotic can help relieve pressure on the ball of the foot.
Ingrown Toenails
The toenail is produced by its own special nail-generating tissue and grows forward to the end of the toe. In the case of the ingrown toenail, which tends to occur most often with the big toe, the nail groove begins to disappear. This can be the result of ill-fitting shoes, or from a deformed way of walking that places an unusual amount of pressure on this area of the foot.
The chronic pressure of the nail edge rubbing against the nail groove causes irritation and swelling of the surrounding skin. This constant pressure can eventually results with infection, leading to even more pain and swelling. Improper trimming of the toenail can also cause problems. If the corner of the toenail is not allowed to grow out past the skin at the end of the nail groove, it may dig into the skin. This makes pressure when walking even more painful.
Ingrown toenails are a common problem for people with CMT due to the pressure placed on the front and side of the foot while walking. When hand dexterity difficulties are an issue, this further exacerbates the problem as nail and foot care can be a challenging task to perform.
Treatment for Ingrown Toenails
Due to sensory loss association with CMT, especially in the foot, it is an important practice to take extra precautions with foot care. If necessary, seek professional assistance to ensure your toenails are regularly trimmed and monitored for ingrown toenails and other problems.
There are various surgical procedures to assist if the condition has been longstanding and resulted in permanent hypertrophy of the tissue surrounding the nail margin. A wedge resection procedure removes of a portion of the hypertrophied tissue and therefore reduces the pressure and irritation. In this procedure, a wedge of tissue is removed and the healing process allows the nail groove to reform itself a partial nail and matrix removal is done in more severe cases; this removes a portion of the toenail and the germinal matrix that produces that portion of the nail. For extreme deformity, a nail and matrix ablation is done to remove the entire nail and its germinal matrix. No new toenail will grow back and this is usually done only as last resort.
Fungal Toenails
According to Dr. Hal Ornstein on footdoctorsnj.com, many people do not realize they have a fungal nail problem and, therefore, do not seek treatment. Yet, fungal toenail infections are a common foot health problem and can persist for years without ever causing pain. The disease, characterized by a change in a toenail’s color, is often considered nothing more than a mere blemish. Left untreated, however, it can present serious problems.
You can prevent fungal nail infections by taking these simple precautions:
- Exercise proper hygiene and regularly inspect your feet and toes.
- Keep your feet clean and dry.
- Wear shower shoes in public facilities whenever possible.
- Clip nails straight across so that the nail does not extend beyond the tip of the toe.
- Use a quality foot powder (talcum, not cornstarch) in conjunction with shoes that fit well and are made of materials that breathe.
- Avoid wearing excessively tight hosiery, which promotes moisture. Socks made of synthetic fiber tend to “wick” away moisture faster than cotton or wool socks, especially for those with lifestyles that are more active.
- Disinfect home pedicure tools and don’t apply polish to nails suspected of infection.
- In severe cases, surgical treatment may be required to remove the infected nail. Permanent removal of a chronically painful nail, which has not responded to any other treatment, permits the fungal infection to be cured and prevents the return of a deformed nail.
Swollen Feet and Ankles
Dr. Greg Carter, one of our CMT advisors, says:
“People with CMT have swelling in their feet and ankles because they don’t have the normal muscle strength and activity in the legs that helps pump the venous blood and lymphatic fluids back towards the heart. This is common in many neuromuscular disorders. Breathing and/or heart problems can definitely cause swelling of the feet and ankles, and can be an early sign of heart failure. People with CMT have to be particularly careful because swollen feet and legs can lead to skin breakdown and ulcers. These ulcers may get infected and sometimes lead to loss of the foot or leg (i.e., if they get gangrene). CMT people are already prone to neuropathic ulcers so they are at very high risk.”
Treatment for Swollen Feet and Ankles
Dr. Carter suggests CMT patients should treat their feet just like diabetics do: daily inspection; gentle soak and cleansing; emollient creams to keep the skin supple; proper foot- wear and correctly fitted braces/orthotics (CMT people should always use custom-fitted braces/orthotics, not off-the-shelf models). TED hose are okay as long as they are taken off for part of the day and the skin thoroughly inspected. Further, CMT people should not smoke because this can lead to peripheral vascular disease (hardening/clogging of the arteries), which worsens the situation.
Calluses
Heel calluses, also called plantar calluses, develop when one metatarsal bone is longer or lower than the others and it hits the ground with more force than it is equipped to handle. As a result, the skin under this bone thickens. The resulting callus causes irritation and pain.
Treatment for Calluses
Because people with CMT often have an imbalanced gait, calluses easily can form. In most cases, heel calluses can be treated without surgery. In severe cases, however, a surgical procedure called an osteotomy is performed to relieve the pressure on the bone.
Restless Leg Syndrome
Restless Leg Syndrome is a sensory-motor disorder and is evidentially related to periodic limb movement disorder (PLMD). Similar to CMT there is often a family history of RLS. People describe the sensation in their legs in a variety of ways such as, tingling, pins and needles, creepy-crawling sensations, sudden jerky movements, and having an irresistible urge to move their legs. Movement temporarily helps to relief the discomfort. RLS becomes more apparent when individuals are at rest and can be very disruptive to the onset of sleep, which ultimately lessens the restfulness that we require from sleeping. It can be disturbing for partners of people who experience RLS as well.
Treatment for Restless Leg Syndrome
There are OTC and prescription medication for the treatment of symptoms. Some lifestyle changes also may alleviate symptoms.
I recently went to an orthopedic doctor for an Achilles injury and he very off-handedly told me that he thinks I have CMT and left it at that. Not knowing what that was, I did not have any follow up questions to ask. After reading about the disease, I believe my father has this and is undiagnosed. He has loss of sensation (head, hands, feet) and extreme weight loss. I myself have gotten horrible foot cramps since the beginning of high school. What is the easiest way to diagnose this disease?
Margaret, Never heard of loss of sensation in head from CMT. Also extreme weight loss is not typical. If anything many tend to gain weight (like myself) from either a reluctance or inability for exercise. Bad foot cramps is not something I experience with CMT. Get a good neurologist and have an exam, EMG test, and discuss family history. The EMG test is fundamental to diagnosis
my son was diagnosed as a small child (he is in his 20’s now). His father and Grandmother also have it. When he was diagnosed they never told me what Type he had. Other than having him retested ( the doctor he saw is no longer practicing) is there a way to determine what type he has. Would it be the same as what my husband and mother in law has.
Hi Melinda, you can have him tested at one of the genetic labs offering Inherited Neuropathies/CMT panel at https://www.hnf-cure.org/genetics-cmt/ Since CMT is passed often from a parent, it is likely if your child has CMT it would be the same type. The only way to know for sure, would be through genetic testing. Do you know if they have a demyelinating or axonal form? AM
I honestly do not know. I feel like I do not know anything at this point. He was diagnosed at 2 years old threw hereditary and symptoms. here in our small area there is not much info and I get so lost online its quite frustrating. At the time we were given the understanding that it was all irrelevant because we could only put Band-Aids on the symptoms. we never new there was a genetic test or anything that could give us more info. at 21 years old he has scoliosis and displaced hips that they want to go in and put synthetic tendons in his back to straiten it. he has drop foot and some other serious feet problems, serious reduced motor skills in his hands as well as gastro problems. He goes of our insurance in 3 years at the longest and really want to make sure we have done everything we can to get him in a knowledgeable set place to start on his own from.
A neurologist will advise you/him. There is genetic testing for some types of CMT
wow glad I found this page, got diagn. w CMT in 92 explains lots of falls and dropping things prayed over me and went on my was, now 2016 at 72 the last 6 months been rough seeing a doc for neuroma in my feet and it hurts to walk pads of my feet so tender always have had crappy shoes ( single parent w 4 kids) got a pair of Keens sandals on layaway but hate clothes in shoes hurts the top of my foot across the bridge any other ideas for a closed in shoe I love moccasins soft tender but is that enough support. Whitedove thank you
My sisters and I all have CMT. I’ve never heard of feeling need for a massage as a symptom.
Maybe he is not being specific enough as to what he is sensing.
There are genetic tests for several types of CMT. So that is an option. You would see a neurologist with your questions.
Hi! I was diagnosed with CMT when I was 12 and in the 7th grade. I am now I am 18 and going off to college in the fall. I was told by my doctor that my CMT would get progressively worse, but in my case it has gotten a lot better. I don’t fall as much as I use to. My friends and family say I walk a lot better even though I still have a weird limp. Could my CMT have somehow reversed? I have only had physical therapy when I was in 7th grade. And that was only 6 sessions. Is there any reason why it got better? Will there ever be a cure?
Hi Kiana,
We are working hard for treatments and a cure. I am so happy that you are doing well with your CMT. Good luck in the Fall.
Glad to hear your CMT has gotten better. Hopefully you are doing things other than taking Neurontin. Have found prescription strength B vitamins and Alpha Lipoic Acid have helped me as I do not take Neurontin as neurologist prescribed. Also have found a device called the “Ulitima Neuro” helps with electrical stimulation of my nerves. It is the home version of a much more expensive one I used at physical therapy (which I strongly encourage on a routine basis). Swimming is the best exercise I have found and the least painful. Keep a positive attitude and practice meditation twice a day for 20 minutes each. May God bless and watch over you
I got diagnosed with cmt when I was 13, I’m 5th generation. The family inherited gene has affected us all differently, some early in life and some later in life. One family member was type 2 7 years ago, now they’re type 6. I’m scared that I won’t be able to do activities with my child, I’m 22 and finding it’s gotten worse where as before it was cramps, weakness but being able to control a steady walking pace without falling, now I got to be extra careful by holding on to things, no feeling on top of my foot but underneath my arch has been very painful and also with frequent hand pain. I know it slowly gets worse over time but the thought of not being able to walk in my 30’s 60’s really frightens me. I’m very active and always have been, always knew I had problems with my feet and listened to one family member by staying active. Cmt is a struggle you have to live with and get on with your day but the thoughts are still there.
Hi! I’m 18 I was diagnosed with CMT when I was 12. My doctor said the the disease was progressive and wouldn’t get any better, but it actually has gotten a lot better. Is there a reason why mine got better when he said it wouldn’t? I haven’t had physical therapy since 7th grade. My last question is do you think there will ever be a cure for CMT or is there one already?
Hi Kiana, that is wonderful news to hear that your CMT has not gotten worse and actually has improved. Can you share with us your lifestyle, for example, do you exercise, what is your diet like, where do you live, etc? There are biopharma companies working on pipeline drugs and HNF is also working on therapy development with several collaborators for some forms of CMT through the Therapeutic Research In Accelerated Discovery (TRIAD) research program. Currently there is a phase 3 clinical trial for CMT1A. Pharnext is the sponsored pharma company and you can review the lists of open sites for screening at https://www.hnf-cure.org/centersofexcellence/
Stay active! The more you use, the more you keep. Activity slows the progress and builds compensatory muscles that counter act the losses you will have.
This is all so interesting. I have “saddleback” feet with neuropathy and my doctor assumed it was psoriatic arthritis because I have psoriasis. I also have the weakness in my hands which he is saying is probably arthritis – I’m only 50. I’m wondering if this is what is wrong with me. The biologics they give me don’t do a thing for me and they are stumped… Hmmm I’ll have to mention this. Which genes do they test for as confirmation?
I was diagnosed with cmt at the age of 5. I am now 41. I have been experiencing swollen feet and calves and the skin feels tight in those areas. I’m assuming this is normal but I’m not sure how to eliminate the discomfort. I do watch a 3 year old 12 to 15 hours a day. Do you have any suggestions on how to make it not be so bothersome? I was taking cymbals for depression and recently stopped it not knowing it could be helping with my neuropathy pain. Could this be a cause of my pain?
Kristi you posted in July 2019 so I hope you come back to the site to read this. I have CMT and so did my mother. It really bothers me at night when I am trying to get off to sleep. Hand lotion or Sorbolene cream (lots of it) smoothed over your feet and legs helps to cool them down and make the skin feel less tight. I don’t know of any other solution for this. My feet feel so bad at night that I suffer from insomnia which is common for CMT patients so we are not alone. Some nights are worse than others so you have to just go with the flow. However worrying about it just makes it a whole lot worse so don’t let yourself worry about it. Just accept it as there is no cure. My feet get so hot at night I have to stick them out from under the sheet or blankets to cool them down. When it gets really bad I play soothing forest sounds from Spotify on my smartphone placed on the side table near my bed and this helps relax me. Just leave it on all night if you have to. Persevere and know that you are not alone. CMT is everywhere all over the world.
Was diagnosed with CMT 1 yr ago when I was 64. Before that was told I simply had peripheral neuropathy. Cramps in feet and calf were main problems. Now noticing numbness in toes that gradually seems to be creeping from toes to lower feet. Did not want to simply take neurontin per neurologist. Now take a prescription B vitamin complex (Metanx) and Alpha Lipoic Acid supplement. Got electrical stimulation from knee to feet for 5 weeks and seemed to help. Insurance restricts that to twice a year. Has anyone heard of this electrical treatment for neuropathy as an advised treatment for CMT?
My husband who is now 68 yrs old was diagnosed with CMT just a few yrs ago. He started complaining about walking and thought his sneakers were tight. We would go places and he had to stop constantly and shaking his foot and fixing his ties was normal for him. He would sit for a few minutes and be able to continue along. It just got progressively worse for us to go anywhere where we had to walk. We live near Orlando, FL so going to the parks was normal for us but was becoming difficult as you can well imagine.
Going to the Doctor was now in order for us to find out what was happening. Podiatrist was a must but after a few visits and not being able to help him he thought it was now time to see a Neurologist. After some testing it was confirmed that he had CMT. The first appointment we were told that he suspected CMT but warned us not to read into this until the tests confirmed it. He had the classic high arch and curled toes. Who knew? He was told that he inherited this and that he was born with it. What we didn’t know was that his Mother had it and we had to figure that out for ourselves because she would NOT get tested and had problems walking as she got older. She used to walk hanging onto counters, walls and anything else she could to help her get by. We are now convinced that she was the one who passed this onto him. She could have been helped had we known more. She lived to the age of 88 but refused to get any testing done as she didn’t like Doctors or pain. It was something that my husband could have been better prepared had he known more.
PLEASE educate yourselves folks, this is serious for families to know and help better understand CMT. My husband worked his 31 yr career as a professional Firefighter in New England with the bitter cold Winters. He thought jumping off of trucks may have caused the pain. Nobody caught this until later in life and to think he could have been helped earlier on. Now he is on medication which helps but we are always learning.
Most recently he went to physical therapy which helped him tremendously but that may not be for everyone. He went from sitting all the time and reading to walking up to almost 5 miles a day. A little more than he should have done but he felt great. He wasn’t able to work the part time job he liked for over a full year but with the help of medication and therapy is now back and able to see people and get out as he did before. He still gets to wash the cars and work in the yard with some limitations. He is learning how to control how much he is able to do. I’m glad to see that he can do some things that stopped for awhile.
Please if you know anyone with CMT, educate yourself and understand it. You will be a better person for it.
We are both signed up for the newsletter to better understand it. Grateful to have found this site.
Barbara
A devoted wife to a patient of CMT
My husband is 69 and was diagnose with CMT . He Inherited from his father , it is getting worse fast . Can you tell me the medication your husband is on . Our neurologist said there was nothing we could do . But I hate to give up .
What medication does your husband take?
Hello…thank you for being here & supportive!
My son just turned 33, confirmed diagnosis of mod-severe CMT 3 mos. ago. He just received AFO’s, both day & night, working wonderfully! He’s finally able to stand in one place & not tip over 🙂
I (his Mother) at 55, knowing that this is a hereditary/ genetic disease, w/ a long list of health issues & walk on outsides of feet/heels, w/ numbness & tingling for 15 yrs…dx Fibromyalgia.
● I am seeking TESTING LOCATIONS IN SYRACUSE, NY, Buffalo, NY, or Rochester, NY. areas (BC/BS Ins.). for myself & information on arranging testing. Is a referral from Provider required?
Any advice/ information/ testing direction, would be greatly appreciated!
Thank you, Jane & Sonny (son)
Jane,
We are offering a CMT workshop in the Rochester area on Tuesday, May 31. Visit https://www.hnf-cure.org/cmt-connect/ to sign up. We also have some doctors in the Rochester area in our Health Care Provider Directory https://www.hnf-cure.org/provider-directory/
We are adding new doctors weekly so check back often.
is there any facilities that can treat in ct ?
Hi Brian,
There is a location in New Britain, CT. The contact info is on this page https://www.hnf-cure.org/centersofexcellence/.
Hi,
I was diagnosed in 2008 but have had CMT for many years but never diagnosed. I had the blood test in 2016 but my type has yet to be discovered. I have seen Dr. David Herrmann at University of Rochester, NY. I have also seen Dr. Michael Shy at the University of Iowa in Iowa city, Iowa. Both are good, Good luck. Keep me posted.
Hi
I have been recently diagnosed with CMT .
I have for a long time had painful feet .( after a while onn my feet they ache badly )
I also have painful Achilles – does anyone else have the Achilles problem?
I am not sure if it is part of the symptons or a separate problem?
Thanks
Richard ( New Zealand)
I have a problem with my Achilles, I have to keep it stretched out. It gets tender and sore at times.
Hey Richard. What part of NZ do you live? I have CMT1A. Janice
Hi Janice, which part of New Zealand are you in. I’m in Palmerston North.
Hi Richard, I too am in New Zealand. I’m currently in the process of trying to get a diagnosis for my condition. For the last year I have had a constant deterioration within my leg. Started out with the most excruciating calf and foot cramps, loss of all muscle in my lower legs. I have little sensation in my feet and tingling from knees down. Extreme tightness in leg and feet tendons. Do have a high arch and the most extreme hammer/claw toes that my podiatrist has ever seen. Have seen a orthopaedic surgeon as part of the podiatrists referral, and he has detailed major surgery to try and help with my pain , but he’s referred me to the hospital’s neurologist to do testing and find out the underlying cause. My father has all the classic CMT signs but as he was diagnosed with multiple sclerosis over 35 years ago no one has ever mentioned or even tested him for CMT.I’ve just had nerve conduction studies and a emg and currently awaiting a neurologist appointment to find out the results. How have things progressed with your symptoms or diagnosis? What part of New Zealand are you in? Cheers Ford
I am 4th generation CMT sufferer. I have no sensation in either leg from mid calf down and suddenly my left foot has split on the ball of the foot. It was ugly and necrosis set in. I know my foot and after a year i healed and swelling was minimal. I have a recurring callous on the ball of my left foot and the big toe has turned westward. Suddenly the swelling is back & thread vein explosions are back all up the calf muscle… My foot feels like it will explode which cant be good as i have no feeling in either feet.
Dr’s in Spain where i live say nothing is wrong. Would appreciate any ideas, help…
Find and buy Vetericyn, a topical spray that will heal any sores you have. It is antiseptic and safe as water. That particular brand is for animals but safe for humans. Look up testimonials.
My father has CMT. I have 3 causative SNP’s in my DNA, but at 48yo, don’t seem to have any symptoms yet. I do have some foot pain and calf weakness (relatively speaking) but I’m a former ballet dancer and ballet teacher and what pain and weakness I have is well within what you might expect from the sort of wear and tear my feet endure. Is it possible to not have symptoms at all?
Hi Jill, I love to read these types of post. Although you have those 3 mutations you are asymptomatic which is incredible. Please be sure to take good care of yourself, try not to worry and live your life. Be aware that there are drugs you must avoid (https://www.hnf-cure.org/neurotoxic-drugs/), unless a doctor feels its imperative and even then be sure to get advice and know that certain drugs may exacerbate or bring on symptoms. I know all to well first hand. My story: https://www.hnf-cure.org/neurotoxic-drugs/
Thank you for sharing!
Allison
[email protected]
Hi.
My brother in law and father has CMT. My husband doesn’t show any symptoms thankfully. He is 33. But he craves for foot massage quite often. I’m very concerned if these are the early symptoms of CMT. Is there any way to know? Please help.
Thank you for reaching out. Do you now what type of CMT that you brother and father in-law have? Your husband can get tested to check if he has CMT. Let me know if you would like more information on testing.
Can you send me information on testing for cmt? We are in the process of trying to get my husband tested.
See a neurologist for EMT and nerve conduction studies. Be surd the neurologist is knowledgeable and/or aware that there is a CMT type two! Best wishes. Prayers.
I am going to be 67 and have had the Pes Cavus since birth. I worked most of all my jobs during my life on my feet. When I was younger they would just hurt. I worked for 17 years in a local elementary school in the maint./custodial dept. Looking back now I broke my feet 4 times in a span from 1988-1998, twice just walking. It was kind of a joke around school for me to watch out for a small pebble. I built my house and many other things, cut firewood for 25 years, played in a band for many years My bandmates would call me Feet man (Pes Cavus) Anyway, I have been to Stanford and they want me to be in some trials, but logistics is a big problem. I recently had to order AFO’s and my lower legs are bad and the skin on my feet is now paper thin. I have lived alone for ten years and I believe these progressive symptons are a mind/body thing with me being in a state of depression for a very long time. Finally my question is what can I use for a foot soak?? I recently tore a calf muscle that won’t heal and by feet bruise for no apparent reason, now I’m starting to get open sores on my feet. Any help would be appreciated.
I’m glad I finally found out about my CMT. I’m appalled that it took until I was 70 years old for a doctor to inform me that I had this well-known condition. Thanks for being there!
I’m sorry it took you so long. We are working hard to change that! Thank you for your support.
I have had issues with lack of leg strength since childhood, being unable to jump in sports such as basketball and Aussie Rules football it was only in my 20s that CMT was diagnosed and the realisation that my mother unknowingly had the same problems with walking. My right foot has a significant “drop” which makes walking difficult on some days. My sense of balance is also not good. Is a form of foot brace going to provide any help with walking? Are there other options? I am 60.
What do doctors offer patients who have substantial pain in their legs from CMT? I was diagnosed at 26, and I’m now 64. For many years, I was fortunate to be able to walk pretty normally. Now, I’m having cramps, pulling sensations, tingling and burning, RLS, and its affecting my quality of life substantially.
I have CMT as did my Mum my brother my sister and my son. I am y3 and have led an active life. Seems to lead to more problems when I get less active. Covid 19 no help. I do get TLS and all sorts of aches and sharp pains in my feet and legs but have great relief from simple magnesium tablets from the supermarket. If I forget to take and get woken in the night with RLS cramps or pains I pop a tab sit down for 20 mins or so and symptoms go away
There is also surgery to correct the feet rather which than living in constant pain.I had bi lateral sub talar arthrodesis with achilles lengthening and muscle and tendon transfers which improved my life incredibly..That was over 20 years ago when I was 30 .Dr Grace Warren pioneer surgeon in neuropatethic limb reconstruction in Sydney Australia and Dr Andew Ellis worked together .about 8 hours surgery.Dr Ellis is without doubt the man to see these days.Peter
Ditto. I loved footy and, at 6ft 6in, I was never able to leap. It was so frustrating-yet I wasn’t aware it was CMT until my mid-20s. The weak leg muscles, sores that take ages to heal, claw foot, callouses, ingrown toenail and, worst of all, balance issues. Still, I realise there are those worse off.
I have had the same problem and discovered that my feet have to be covered at all times to relieve the pain. I am always in socks and even in summer have to cover my feet with a comforter plus I cannot walk barefoot or even wear a slipper the pain would be excruciating. I do get relief with 200mg Alph Liopic acid twice daily, but have to take every day.
Hi Everybody,
My father has CMT, and I did develop claw foot after pregnancy which led to all sorts of leg pain for a few years. I don’t know if it will help you as I don’t believe that I have CMT… but aside from orthotics… YOGA TOES finally fixed my toes.
I tried these rubbery toe inserts by chance, because my chiropodist sold them, and I read that they help to tone the muscles of the toes. They were of a huge benefit, and I no longer clench my toes or claw at the ground when I walk.
All the best and good luck to you all.
Yes the braces are amazing! I wear 2 and you can not tell at all if i wear jeans.
Which braces are you referring to?
I have about 8 out of 10 symptoms of CMT disease and when I tell my primary care and pain doctors they ignore me. I’m lost what to do. My EMG shows muscle wasting away in my right foot. Where or what can I do to get a test, what test is there to dx me with CMT?
Where do you live?
Forget your primary care doctor. He wont understand CMT. Most Podiatrists are ignorant about it too. I developed all the symptoms at age 13, but did not learn it was CMT until I was 70. Over the years I had seen 9 different podiatrists who performed various surgery’s (pinning of toes, metatarsal resections, fusions, osteotomy’s, etc., but none put a name to it. But in 2008 I went to a small town podiatrist who told me instantly upon examination that it was CMT.
I found out early on that wearing 8 inch heavy work boots gave me the support I needed, and helped control the drop foot. I worked my whole life starting at age 15 and didn’t retire until I turned 70.
Two years ago I finally gave in and got AFO’s. That helps a lot. Now, at 81, I use a cane to help with balance, but am mostly sedentary.
So, for most it is a full life of hurting. I came to this site today to see what other patients use to control pain. I developed Rhabdomyolysis in 2015 so can no longer use Tylenol, and take other medications that wont allow me to take n’saids.
Find a neurologist and see about genetic testing.
I just got got diagnosed with this. Seen a neurologist 2 weeks ago and had the genetic testing done.
My CMT was diagnosed by a neurologist. He noticed some of the signs of CMT high instep arch etc. He did a nerve conduction test which measures the speed at which the signal travels from the brain to my feet and back. You can also contact the muscular dystrophy association MDA. CMT, being nerve disorder comes under the MDA watch. I was able to get a DNA blood test which indicated I had the gene marker for CMT.
I was diagnosed with peripheral neuropathy due to high arches 12 years ago. However, the more I read I think I have CMT. I was never able to jump as a child and I have always had a problem wearing slip-on shoes because of my higher than normal arches. Two years ago I had surgery for four hammer toes and i have gone to physical therapy for years because of my achilles tendens. My family doctor does not support my therory since I was diagnosed and don’t know where to go from here.
I went to an orthopedics who noticed weakness in both ankles were not normal and had me take a nerve and muscles test where it was diagnosed. I though I only had weakness in one ankle due to an injury and that physically therapy would correct my problem. Then I went to a neurologist who also confirmed at 66! I, too had been going through my whole life not being able to jump and had horrible balance. Just now being diagnosed.
Get your primary to order a blood test for genetics. You can also get a nerve conduction test. But two way to know for sure is a genetic test to see if you have the pm22 gene or other jeans.
You should see a neurologist. That type of doctor is familiar with all types of neuromuscular diseases.
My granddaughter was taken to several Drs for years from falls. Finally a genetic test showing the CMT genes. She’s now 14 with two major surgeries on her feet. She will have to wear braces the rest of her life. She has hammertoes still that makes walking painful.
Please make sure you JOIN the Global Registry for Inherited Neuropathies (GRIN).
Link: https://www.hnf-cure.org/registry/
I’ve CMT for over 20 years along with 2 more forms of Muscular Dystrophies. But here lately my legs will not stop hurting no matter what I use or take. Are there any OTC treatments that might help with my prescription. Thank you,
Shannon H.
On the ball of my foot I have developed like a callus but it sticks out is there anything I can do to help so there’s not so much pain walking on my foot I do have a job where I’m on my feet for 12 to 16 hours so anything to help relieve a little pain would be helpful
It’s not “well-known”, that’s the problem. Maybe 10% of my doctors I see have ever heard of CMT.
I am 68 years old and right now I am suffering with open wounds, ulcerations on both legs due to cmt. I never realized that the problems with heart and venous insuficiency were caused by this disease. I am in constant pain and bedridden except to go to the bathroom.
Let me just say, CMT is not a “well known condition”. In fact in medical school very little time is spent in the education process of CMT. Most doctors still have very little knowledge of this disease. Took me 10 years to be diagnosed and the doctors most knowledge in CMT are Neurologist. I saw 4 Neurologist, 2 at teaching hospitals, who told me I had Diabetic Neuropathy. Problem was I didn’t have diabetes. Took an Internist to finally decide to do a DNA test for CMT…. bingo. So don’t blame your doctor as the specialist for CMT overlook it a lot.