r/CMT

He blew my current neuro out of the water. I was able to get free genetic testing in his office so I can officially learn what type of CMT I have (mom had to pay $2000 and had CMT1A). He sent me referrals to Physiatry doctor, a podiatrist, and a much needed MRI on my lower back. He did more for met on this first visit than my previous neuro did for years. And he upped my gabapentin.

He also put my mind at ease for my worry about epilepsy, my mother had it and she died from it and I was concerned it could be CMT related but he told me it wasn’t. He took his time with me and spoke so highly of my mother.

And he also gave me hope, saying there’s clinical trials for CMT that are looking promising. I haven’t had hope in a long time.

I’m just so happy and wanted to share it with others who understand since I no longer have my mother who understood our troubles. I don’t post a lot but I just had to share. I’ve not been well after losing my mom so unexpectedly in December.

I am looking for strength training exercises that I can do at home. I’m willing to pay some for something on YouTube or for a virtual consultation to help design a program specifically for me. It’s easier for me to do at home than to go to a gym due to other health issues.

EDIT: oh god the typo ms :( advice you wish you had been given?
What is something you wish you had been told when you were first diagnosed with CMT or how you’ve learned to live with certain things, or even things that you thought were normal but aren’t

Recently I 18F was diagnosed with CMT1A, with the start of neuropathy in lower extremities. I have a genetic counseling appointment in October. (However I’m not really sure what I’m supposed to ask :/ I’m very lost)
Ive always had other leg issues that have kept me from pursuing sports prior to this but I’ve also never not been “active”. I love hiking and just walking around, hell I waitress for a living right now and love getting to move around.
I walked on my toes in childhood and was sent to PT to help correct it (along with some other issues) that didn’t help and found myself finding comfort in high top skate shoes, like converse chucks, or big chunky Osiris shoes. When I initially went in for my evaluation and testing the person evaluating me mentions that my shoes could me similar to a “bad” make shift AFO, and the more I think about it the more it sorta? Makes sense.
I’m having a really hard time understanding what pain that I might be in might not be average, along with struggling with the idea of whether I still want to have a child later in life, or how it might progress in myself / will I be disabled at some point if I’m not already?
Not only that, but I’ve seen many people be giving gabapentin as a prescription along with my mother but I’m very concerned with that due to many new studies coming out :((
Does anyone have any advice they wish they had been given?
Again sorry for long post, I’m not really sure where to start. Thx :/

Recently started walking on the treadmill for exercise instead of stationary cycling and it's more difficult, but I like the functional gains it supports. Would you recommend walking for exercise with or without AFOs? I usually only wear them at work, and without them otherwise, but I'm not sure if walking without them is supporting maladaptive compensatory mechanisms and worsening my gait, or reinforcing compensatory mechanisms that support a functional gait without my AFOs on.

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.

Agora que estou fazendo estágio em direito eu preciso de vestes mais adequadas, eu achei o meu sapato social muito pesado pra rotina e queria algo mais leve.

Acham que eu deveria tentar mocassins ou talvez procurar sapatos da mesma categoria só que mais leves?

I have a mild form of cmt and all my life I have wanted a family of my own. I come here to ask, people who have cmt from their parents who also deal with the condition. Do you ever feel any type of way about your parents for choosing to have a child with the knowledge they too could get cmt? Or is it comforting having a person in your life who understands it first hand?

Since a while I have new neural symptoms in my legs and feet (one leg more than the other). They change from day to day. It is like there is more electrical charge in my legs than there should be. As if they need to be discharged. Sometimes I feel it radiating right down the back of my thigh, through my knee, lower leg, and foot, accompanied by numbness or a sensation like an electric shock. My legs feel numb, tingly, or sometimes stiff, solid, and tingling (sensation-wise). I know through an MRI that the problem is not in my back, but the neurologist really had no idea what was going on. As usual, they attributed it to the rarity of CMT and encouraged me to tolerate it.

Does someone have any idea of what kind of supplements could help for the reduction of symptoms? I already take B12, D, CoQ10, which really help me having energy during the day.

HNPP, not HNNP. Sorry. Can't edit titles.

Earlier this year, I woke up randomly with wrist drop in my left hand. It was like when you wake up with your arm asleep, except it didn't stop. It was two weeks before I was back to work. I wasn't 100%, but I was 95% of the way there. Weaker and tired more easily. Before and during this time, I'd began experiencing what I believe to be tendon pain due to repetitive movements (dishwasher/line cook).

Some months later, it happened again to my right arm. My right arm was only slightly affected. I believe I woke up on my back. It was over in about a week, though it was weaker.

Then about a month after that, I woke up flat on my back, same position I'd fallen asleep in, and it had happened to my left arm again. And it was even worse. That took at least two months to recover to a point of somewhat normal movement, albeit weaker still and slightly different hand posture.

In recent weeks, I have had some instances of trying to push myself up with my hands, say off my bed, and then my thumb joints popping in a way that was not pleasant. The last time it happened to my right, it hurt quite a bit, and my thumb has not been the same since. It feels like sometimes it gets worse, and then it is slightly improved by squeezing around my thumb to push it back together. Some days ago it felt like my left wrist joint was sliding, and then I squeezed around my left wrist, and I felt a small pop, and then there was no more discomfort.

I feel like my whole life, my limbs have been more susceptible to falling asleep. I remember many, many times of sitting in the gym at school for assembly and my legs falling asleep in whatever position I was sitting in. I specifically remember one time where it became so tingly that it took quite a while to come back. I've basically always been unable to lie on my stomach because my arms go tingly so fast. I have difficulty doing exercise positions where you lay on your side with your arm in any position because my arms go numb so fast.

I saw a neurologist a little bit ago, there is damage to the radial nerve of my right arm, I can only assume my left arm too because it's had like 3x what my right arm has. He had me do bloodwork to test for HNPP, and I just checked it and there is no indication of HNPP.

I feel very upset at the results, I had 'hoped' it was HNPP so I'd have an answer. I feel frustrated not knowing what it is, if it's going to get worse, if it's even something at all...

These past few months have been very uneventful. I no longer work due to unrelated reasons, but at this point I could not go back to the job because I have to ration use of my hands all day every day. If I do dishes or clean my room one day, I'm going to feel it the next and I'm not going to be able to do very much that next day. I basically can't do most of my hobbies because they almost all involve hands.

I am calling the neurologist tomorrow, but I'm wondering what the thoughts of people with similar problems would be? If it's not HNPP, then what? I'm so anxious not knowing what's happening.

Editing to add:

Somehow I forgot to include this in the post, but last night I ended up falling adleep in my computer chair. I woke up in the middle of the night with my left arm quite tingly and slightly paralysed again. I felt what I believed to be the general path of the radial nerve all the way up my forearm behind my upper arm and to my shoulder. I felt fuzziness and tingling along that whole path. I got out of the chair. I went to sleep in my bed. I woke up and it's still fuzzy and tingling, it's been almost 24hrs and it's still messed up. The way I was positioned in the chair, I don't believe it pressed on any part of my radial nerve. Certainly nothing higher up in the arm. I'm so confused and upset.

Anyone else with CMT have dysphagia (trouble swallowing) or it’s not that common and there’s no direct correlation? My vocal cord is mildly compromised due to CMT according to my neuro, but haven’t said anything about the dysphagia

I’m looking around for shoes to wear! I know there’s different types of CMT, but I’d love to hear about what shoes you have.
The brands Altra and Topo seem to be pretty good for me so far. I’ve been wearing “zero drop” shoes.

I really want to kill myself, I give up, this disease is a filth beyond describable, comprehensible words, I HATE, I FUCKING DETEST that I will NEVER be able to move, to function at the level of a NORMAL, UNAFFECTED person, to not have to THINK about my movements, the sheer amount of hate, anger and jealousy I feel is enough to fill 500 fucking Empire State Buildings worth of pages of scripture on the walls, I feel HUMILIATED for even trying “physical exercise” I feel like some sort of fucking dog with 3 legs and a missing eye participating in a race where all the other dogs are PERFECTLY ABLED. And it’s not even mainly that which causes the majority of my suffering with this disease, ignore the weakness, stiffness and UNRESPONSIVENESS of my body, it’s the continuous twitching I have in my muscles all across my body THAT I CANT GET TO STOP, which is just a constant reminder there every few seconds to REMIND ME just for the fuck of it that I have this disease, I’m done, this degree of filth and error shouldn’t exist and you should feel disgusting for being unlucky enough to have been born and completely LOST the genetic lottery with it, just like I have, fuck CHANCE THATS all it fucking is, CHANCE, PURE FUCKING LUCK AT CONCEPTION, and oh well I guess I happened to roll a fucking 1 that dictates my whole life, I hate that this is all I fucking think about, but can you blame me? It’s taken up so much of my personality I don’t even feel like a whole individual with any sort of hobbies or interests anymore, this FILTH is the centrepiece and root of ALL my suffering.

i’m trying this again as I didn’t really get a response last time. I have listed my symptoms below. I have no family history of CMT and I have a huge family, but I’m wondering if any of these symptoms or progression seem similar to what you guys have been dealing with?

Thank you in advance,

Age/Sex: 35M
Timeline: Symptoms started in January 2026 and have slowly progressed.

Symptoms:
Hand & Arm Symptoms
• Bilateral hand numbness (started in pinkies, left worse than right)
• Progressive numbness spreading across fingers and into the whole hand
• Hand weakness (grip strength, finger extension, finger flexion, wrist extension)
• Difficulty with fine motor tasks (tying shoes, typing, squeezing a lime, pushing soap dispensers, opening jars)
• Dropping objects
• Hands feeling cold
• Pressure sensation (“like a rubber band around the hand”)
• Pain in the right palm (after straining to open a jar)
• Difficulty straightening the pinky
• Episodes of near-complete left-hand numbness
• Wrist weakness (difficulty lifting the wrist above neutral)
• Collarbone numbness
• Armpit numbness
• Shoulder heaviness and tightness (especially right side)

Face, Head & Cranial Symptoms
• Right-sided scalp and forehead numbness
• Facial numbness (right side)
• Past episode of upper lip-to-nose numbness (resolved after weeks)
• Slight difficulty swallowing on rare occasions
• Blurry vision / trouble focusing
• Occasional dizziness and balance issues with fast head movements

Lower Extremity Symptoms
• Right big toe numbness
• Left heel (plantar) numbness
• Occasional tingling in the feet

Other / Early Symptoms
• Audible clicking in the neck when turning the head
• Tightness and discomfort in the upper back and neck (around the time symptoms started)
• Vibrating sensation along the ulnar nerve area when lying down at night

Test results:
• EMG/NCS (April 2026): Slowed conduction velocities and conduction block in multiple nerves of the arms and legs. Both sensory and motor nerves involved.
• MRI Brain: Normal
• MRI Cervical spine: Mild left C6-7 disc finding (doctors said it does not explain the bilateral symptoms)
• Bloodwork (mostly normal):
• Lyme: negative
• ANA, SSA/SSB, ANCA, Rheumatoid factor: negative
• ESR, CRP, CK: normal
• GM1 antibodies (IgG and IgM): negative
• Vitamin B6, CBC, BNP: normal
• Hepatitis C, syphilis, serum ACE, urine protein: normal
• Polyclonal immunoglobulins present (no monoclonal protein)

• Genetic testing scheduled for September
Looking for anyone who has had a similar progressive pattern with these types of nerve study findings.
Any experiences or thoughts are appreciated. Thank you.

Oldest turned 4 this past Saturday, so of course that’s the day we had her birthday party. We rented out a 24ft inflatable water slide that EVERYONE begged me to get on. Finally I obliged, Sunday I was hurting. Today… the pain is unbearable, the exhaustion is unreal. My hands feel swollen, my neck hurts so bad that it feels like one wrong move and it’ll just break. My ankles are bruised. I feel unstable. I’m taking ibuprofen but that’s not touching it.
Not looking for sympathy, don’t really know why I’m posting this lol.

I went to add a new user flair (CMT X1 instead of just CMT X) and realized that I could turn on editable flairs so people can make their own. Try not to go too wild, but if we do not have a flair for your subtype now you can make your own instead of asking for one to be made.

I tried AFO’s for the first time this week! It was such an amazing experience. I still have limited dorsiflexion but I’ve always struggled with it. As the CMT progressed, my tripping has gotten worse but I can still get through most of my walking that I need to complete.

Walking with the AFOs made it feel like my feet were flying!

I wanted to post to share some hope of getting some quality of life improvement!

Today, we had office away day and agenda for the day was movie, team lunch and games. It was nice experience to me because It was first time for me to watch movie in cinema.

Then I enjoyed lunch with my office colleagues and bonded with my people:)

Coming to game part, There were lots of games like bowling, claw machine, driving games etc etc

Many people were enjoying bowling but I was feeling separated there because I can't do bowling as bowl require good weight to hold and throw with maintaining balance - I was afraid whether I can do it or not, so I didn't try. These are the aspects in life when I feel, I wish I was also normal like them to enjoy things fullest.

Happy Friday:)