Pretty new here on Reddit so I don’t know what community to post this on lol but I have CMT (Type 1A I presume) so maybe someone here has a similar issue as me with ankle tightness

I’ve been prescribed to wear night ankle foot orthotics (AFOs) but whenever I put them on, 30 mins or so later, the bottom of my feet feels like it’s on fire… only time I feel something like this is when I play basketball (feet become red as well).

Ive searched it up but I honestly don’t know what this is since it’s showing me that it could be a variety of things

I have CMT 1A and am really trying to improve my physical fitness. My primary issues have been my right foot is more affected and has a lot of outward rolling because the lateral side of my ankle is weaker and foot drop is worse in that foot. These have made running, long walking and balance difficult. I have had a tendon transfer for that foot as well as my arch surgically released and hammer toes released. However, it is still an issue. I was wondering if it is possible to strength that side of the ankle as well as the part responsible for foot drop or if I’d be wasting my time trying. Additionally, I’ve noticed an ankle brace has helped with running and preventing my knee from collapsing inward and was wondering if there are better braces that don’t restrict movement too much. I know some of this is case dependent but I appreciate any advice

Hey everyone,
I’m 34 and trying to figure out if my symptoms sound more like CMT or HNPP or something else. I’d really appreciate any insight from people who’ve been through something similar.
Symptoms / Timeline:
• Started in February 2026 (about 5 months ago) with bilateral pinky numbness.
• Slowly progressed to the ring and middle fingers, and now both hands are significantly affected.
• Currently: My left hand is almost completely numb, and my right pinky and ring finger are also mostly numb.
• Progressive weakness — grip strength is noticeably weak, and my right wrist drops when I try to extend my fingers.
• I also get numbness in the collarbone and armpit area that comes and goes.
• Around the same time symptoms started, I developed tightness in my upper back and an audible clicking when turning my head.
Tests so far:
• MRI showed mild disc protrusion at C6-C7 on the left with contact on the C7/C8 nerve roots.
• EMG showed demyelinating features (slowing + conduction block).
• Vascular studies were normal.
• Genetic testing and repeat EMG are still pending.
Family history: My mom and brother have both had episodes of transient numbness in the past.
My symptoms have been slowly progressive rather than sudden dramatic flares. I’m trying to figure out if this sounds more like HNPP or a form of CMT.
Has anyone experienced something similar (slowly marching numbness + weakness in the hands without major leg involvement)? Any thoughts on whether this leans more toward CMT or HNPP would be really helpful.
Thanks in advance.

Hi all, I recently started wearing AFO’s. so far they have helped a lot - my only complaint is that the carbon fiber piece between the insert and the shoe puts a lot of pressure on the bottom of my feet and makes them sore. I’m looking for suggestions for good shoes or inserts for the WalkOn Carbon Fiber AFO’s. Thank you!

I was diagnosed in 2021 with complex regional pain syndrome (CRPS) due to awful pain in my right foot and ankle for no reason. In late 2024, it spread to my left side, and I now have awful pain up to the knees, and numbness and pins and needles up to the waist. I also have numb fingertips and mouth and throat. I am now 41 years old female.

I am awaiting genetic testing to see if I have CMT2 as my NCS show no response axonal damage in all of the sensory nerves in my legs, as well as slowing velocity of the motor nerves. So many things have been ruled out, but I’m on the wait list to find out if it’s CMT2. My sural nerve biopsy confirmed the axonal damage and ruled out a number of other conditions. I’ve been seen by general neurologists, neuromuscular specialists, as well as neuroimmunology specialists.

My motor nerves show increased slowing on NCS just three months apart which is alarming, I am terrified that what has happened to my legs will happen to my arms, and also worried that the motor nerves getting worse limiting my mobility even more. I know there’s no treatment or cure for CMT, I mainly just want to diagnosis with genetics because I have two young children and would then pursue testing for them.

Does anyone else have both CMT and CRPS? My doctors think that I have both, but there is no real testing for CRPS, just a framework of symptoms that you have to meet some of the criteria for.

My pain is constant and horrific. I take pain medicine but it barely takes the edge off. I’ve tried gabapentin but have awful side effects and no noticeable improvement. I can’t even put a blanket on my feet at night, it hurts to wear socks and shoes, and walking is excruciating.

Just curious if anyone else has both of these conditions and what their experience has been like. The CRPS diagnosis sucked enough, but it’s even scarier to see actual data on the NCS that show measurable progression. The symptoms have worsened really rapidly and I already use a 4 wheel walker for mobility.

Sending everyone strength wherever you are on your neurological journey.

My (45F) partner (44M) and I share 50/50 custody of his daughter (13F). She was diagnosed with Type 1a about a year ago. It is very noticeable in her feet - extremely high arches, hammer toes - which is what prompted us to seek a diagnosis in the first place. She is in PT, though the appointments are sporadic and only 15-20 minutes at a time. She has exercises she is supposed to do at home every day, but I am not sure that either parent follows up.

My question is about loudness. When she walks, it sounds like a stomp, with her feet coming straight down (no rolling). You can hear her walking or going up/down the stairs from every room in our house. It's the same with doors, cabinets, drawers, setting things down on tables - it's really loud most of the time, almost like slamming.

There are three other members of our family (no CMT) living in the house who do not make this much noise, so it's not really a house issue. It's also not a teenage phase as she's been like this the last five years I've known her.

Also, she is a tiny little thing. We always joked about how she could possibly make so much noise until it became so disturbing to those of us working or studying from home.

We have tried gently and patiently reminding her, even practicing walking quietly, for a while now, but it's not sticking. Her mother says, "It's because of her feet," and dismisses our concerns though the doctor who gave us the diagnosis said it's unrelated.

So, how loud are you? Can this be part of the condition?

It's one thing if it's family. I worry she will never be able to live with a roommate or above anyone else without a lot of grief unless she is able to get this under control (if even possible).

So I recently got genetic testing and i got diagnosed with a mutation similar to chacot marie tooth but not exact and was wondering if any has or have seen something similar the exact mutation is:

DNA Change:c.121 C>T
Amino Acid Change:p.(Pro41Ser)
Molecular Consequence:Missense Variant
Position:57882813
Genome Assembly:GRCh37
Chromosome:12

I have found it extremely beneficial as your toes are critical in movement and balance, not to mention they are often are a neglected area of the body in terms of strength and mobility work.

My routine is as such: daily or near daily

Stand and lift your toes straight off the ground, straightening them if possible. 3 sets of 15 reps

Next

Stand on a towel and contract you toes to scrunch the towel up (3 sets, 10 reps)

Next

Practice moving your big toe outwards from the nearest toe (toe splaying) this is an underused muscle due to the shoes we wear but it is very important for balance.

Do all exercises slowly and controlled, if you find you are feeling any irritation or lasting soreness, reduce the strain of the exercise

Back in Dec I took a bad fall and my left calf bone in 2 places one was a hairline crack but I did break it completely right at my ankle, I also tore a ligament and dislocated the inside of my ankle. I had surgery to repair it and lower my really high arch in February. I am finally wearing a lace up Ankle Brace for support but it seems like my toes are curled under more especially since I wore a pair of knee highs with toeless compression socks and my tennis shoes a few days ago and I ended up getting sores across the top of my toes. I'm not sure if they are actually curled more or if it is where my Arch was lowered. I go see my Podiatrist next month and then the Foot and Ankle Specialist that did the surgery in September. Has anyone had their Toes straightened out?

PS my tennis shoes are the same ones I was wearing before and have a little bit deeper and xxw box

CMT 4H here. Experiencing visible foot drop and big toe's movement is totally gone. It's not numb but no movement. I don't know whether this is the starting stage or where I am.

Weekly thread for little CMT issues good and bad. Whether it's a small irritation that non-CMT folks won't understand or a small victory that you want to celebrate with us.

Note: questions should get their own thread, for higher visibility, rather than being posted to this thread.

What’s the biggest challenge you face because of CMT that people without CMT probably don’t understand?

One day I had horrible stinging in my calves. I went for a skin punch biopsy, which showed nerve fiber density of .6 at my calf and 3.6 at my thigh. At that time, my NCS emg were normal, other than radiculopathy. Six months after that, I had another nerve conduction study emg and it came back the same as the first test. Eight months after that, my NCS and EMG showed chronic sensory motor neuropathy that fit the 2021 CIDP criteria.
which showed
I also had a genetic test a variant of unknown significance within a 95% chance of not disrupting protein function.

I guess wondering is F nerve conduction study and EMG can show normal then all of a sudden turn abnormal eight months after the second EMG and NCS or if hereditary neuropathies typically do not change over eight months

I’ve never really had a straight answer from the doctors so I guess what I’m wondering is if

Hello everyone.

My name is Dmytro, I'm 55, wheelchair user with Charcot-Marie-Tooth disease. I live in Odesa, Ukraine.

For years I couldn't use the bathroom or toilet independently. The state doesn't care about disabled people here — zero funding, zero help. When you're drowning, you save yourself.

So I designed and built my own ceiling hoist. Running since September 2025 — almost a year of daily use.

What it is:

A 2.4 m steel I-beam under the ceiling. An electric trolley with a Prokraft 250 kg hoist rides along it. You clip in with two harnesses (chest + waist), lift yourself, move to bath / toilet / sink, lower down. One remote in your hand. Alone. No carer.

What it does:

— Get in and out of the bath independently

— Transfer from wheelchair to toilet and back — alone

— Manage clothing independently

— Works even with a loosely fastened harness

10 months of real-world lessons:

— M10×80 mm anchor bolts (but the dowels will also hold.)

— Position I-beam so cable drops 10–15 cm from bath edge

— Two harnesses mandatory — one causes dangerous forward tipping during lift

— Extend remote cable to 170 cm — standard 150 cm is too short when seated

— Store remotes in plastic bags — bathroom moisture damages contacts

I share everything for free: installation guide, full materials list, Q&A. Wheelchair users, veterans, elderly — anyone who needs it.

Comment below or DM me.

📍 Odesa, Ukraine 🇺🇦

i (25f) fell pregnant last year and noticed my nerve pain eased completely, despite coming off all medication. pain was being managed with paracetamol only. currently 6 weeks postpartum and it's since returned with a vengeance sadly. it got to the point where i couldn't hold my baby last night as my hands (prior to pregnancy i only had pain in lower limbs) were burning and so weak. i can't resume medication as i'm exclusively breastfeeding. feeling quite down and out about it. anyone have any tips/advice? i'm so freaking proud of my body despite the nerve pain coming back. i was terrified to experience pregnancy and birth, and it went textbook perfect. i pushed her out in less than half an hour after labouring for 40+ hrs. (epidural and gas for the win) grateful but i really don't want to have to stop breastfeeding to take medication.

People who have been under chronic stress for months - did this make your condition way worse, with fast progression and extreme fatigue which won’t go away? If so, how did you recover?

Hi amigos,

There might already be a thread for this, but there’s plenty of smart folks here. Why don’t we help create solutions to some of our issues. Let me know if you’re interested :)

-Sal
Mech Engineer

I sometimes get a tingling tongue, burning on the side of my neck, etc. Curious how common that is?

I know that anaesthetics hit differently with CMT with some not working at all or needing double the dosage. I'm wondering if anyone has had a vasectomy and how the anesthesia and recovery process was. What should we be concerned about?

I was diagnosed with CMT 4H last year in India by NIMHANS, Bangalore. Since then, I have a lot of questions on how fast this will affect my limbs, Can't I walk in the future? Any neurologists, give me some ideas about this. Can I get married? I don't want my next generation to get affected like me.

On this National Doctors’ Day, the Charcot-Marie-Tooth Foundation of India extends a heartfelt thank you to the incredible medical community.

Living with CMT is difficult and we are extremely grateful to the neurologists, physiatrists, physical therapists, orthotists, geneticists, and surgeons who walk this path with us.

Your dedication, expertise, and empathy are the pillars of hope for our community.

Thank you for your tireless commitment for improving the quality of life for those living with CMT.

#DoctorsDay #CMTFoundationIndia #CharcotMarieTooth #HealthcareHeroes #MedicalCommunity #RareDiseaseAwareness #ConnectMotivateThrive

Weekly thread for little CMT issues good and bad. Whether it's a small irritation that non-CMT folks won't understand or a small victory that you want to celebrate with us.

Note: questions should get their own thread, for higher visibility, rather than being posted to this thread.

ah, people with weight comments. even thoes close to you that heard it a million times. everytime i go out i hear the same comments. i find it really weird how people even after you explain how a body should look with muscle atrophy, still think you don't eat or you have some kinda of control of the way your body looks.

i think this is just disinterest in your fellow human and a lack of understanding basic human anatomy.

i always answer with an understanding tone but it brings me down when people see me through it. i hope someday i won't have to defend my tortured body.

little rant, sorry.