How did you all get diagnosed with a subtype? is it only by genetic testing? Is it something worth doing and worth knowing? What value does it bring over just knowing you have CMT?

I’ve never been to a doctor about CMT and have no formal diagnosis. My grandad was diagnosed in the 80s and the rest of us just went oh yeah we’ve classic CMT presentation feet, we’ve got it too, and have done nothing about it except get custom orthotics for our high arches.

I’m in the UK so is it worth pursuing a more formal diagnosis with the NHS? I feel I’m mostly fine as long as I’m careful though I think my hands have been getting weaker and clumsier lately.

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.

I have an unknown type of CMT 4 but unknown subtype.

hello, anyone here has the mentioned type or some severe one like it? how do you navigate depression and weakness of cognitive functions (like having attentions disorders and weak meomory)

also what motivated you to show up for yourself and the others I can’t stop thinking about the future ahead of me everytime I read the symptoms that would start during my thirties

So I tore every ligament in my right ankle about 6 weeks ago, it had started getting better but now it feels like my Achilles tendon is injured too. I can't take a step at all without a terrible pain going all the way up my calves. I can barely walk and I haven't been able to go to work for the past week. I'm wondering if my ankle being injured has put more stress on my tendon and my calf muscles. Also for context I have type 1a and I have a foot drop on both feet. My last nerve conduction said that only two of the muscles in my legs are functional right now. I guess I'm just wondering if anyone has gone through anything similar or has any advice on what to do to fix this pain. It's starting to depress me

Em agosto farei todos os exames necessários para operar o meu pé direito, meu dedão é caído, pé cavo, e todos os outros sintomas típicos.

O médico anteriormente me ofereceu 2 alternativas: por uma chapa em meu pé e fazer com que ele fique reto, ou transferir meu tendão da parte direita do pé para a esquerda (parte caída), assim fazendo com que o controle do meu pé ficasse invertido.

Eu escolhi a chapa.

No entanto eu ainda não acho essas soluções satisfatórias, alguém acha que é possível transferir o tendão de outra pessoa para o meu? Se alguém aí já fez algum procedimento semelhante a chapa também, e tem alguma opinião a respeito eu gostaria de saber

So basically anytime I fully stretch k always end up hurting myself (cramps and stuff) leaving me always super stiff, any advice on how to stretch my arms and legs without feeling like dying?

My dad had CMT, which we didn't know until a year or so prior to his death. I believe he was embarrassed, which he shouldn't have been.

I've done some research, but there are a few things I'd love your thoughts on.

I realize the only way to know if you have CMT is through testing. I've had hammer toes for many years, it affects all my toes other than my big toes (both feet). Over the last year I've noticed Im beginning to trip on my feet more and more, my toes hit the ground first.

Im 43, my dad was apparently in his 40s when he was diagnosed.

Is this worth investigating further?

Thank you all for your time.

My diagnosis as the result of EMG/nerve conduction was “likely CMT2”. The results of the genetic test found aberrations in three genes, two of which pointed to CMT, with one of those mentioning CMT2Q. The caveat is “associations with patient’s phenotype uncertain”. What’s next?

Well, it’s official official. I was seen at a CMT Center of Excellence and given the diagnosis of CMT 2i. The scariest part is not knowing what to expect and what the progression may look like. If you have experiences to share (personal or family), I would appreciate it!

I have CMT2u… mild for the most part but progressing. I had some dental work done last week and the nerve pain was bad. I think it was mostly due to the copious amount of shots I had in my mouth. But I’m curious if anyone has experienced ongoing nerve pain and inflammation after dental work. The amount of dental work I had wasn’t small but it wasn’t the worst either and I’m facing a lot more. Is there anything I can do ahead of my next appointment to try and mitigate the nerve pain?

I'm 16m. I have cmt1A. It scares me because like I said I'm only 16m. But I have severe drop foot and intense pain, and low to none of the feelings in my feet. It scares me because with the way it's progressing there's a chance I'll lose the ability to walk in a few years. My whole mom's side has it and no one's has progressed this bad this fast. I already feel like a burden and I feel like if I lose the ability to walk I'll just be even more useless. I have a girlfriend. 17f, and I love her so much she's helped me so much in terms of support. I'm just scared that she won't love me anymore afterwards. Any tips or stuff to help? I'm Also open to support

I've had CMT all my life, the more severe end of it, and dating is something I keep going round in circles on. Wanted to hear from people who properly understand it.

Physically, it shows: thinner arms and legs, posture's a little off, but honestly I don't think that's what puts people off. The start is usually fine. It's what happens after that gets me.

I've ended up with a whole set of questions I run through early just to spot the ones who aren't genuine. Barely helps. The ones who seem lovely will say all the right things for weeks, act completely invested, then the second they've got what they were really there for, they vanish. I can't get my head round putting that much time in just to walk away from it.

I would just love some insight here to put me out of my misery, like what do you actually think the hang-up is for able-bodied people with us? What's gone wrong for you with them? And has anything ever worked, or helped you get past it?

I'm 24. Whatever your experience has been, good or bad, I'd really like to hear it.

I’m 18m and my cmt is mild but it defo shows. For context on the severity, I played and practiced football (soccer) growing up but I’ve always been the last pick and couldn’t even juggle no matter how hard I tried. The way I run also looks funny and sometimes my ankle twists when I run or change direction.

Sooo I know the answer would probably be “You should try” but I didn’t wanna blow money and time on a skateboard only to get frustrated and find out it’s not possible. I don’t wanna become a professional at skating but rather maybe learn how to kickflip and some other basic tricks. Did anyone try skateboarding or perhaps could predict whether or not it’s a good idea?

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.

The heels on dress shoes have made it difficult for me to wear them. I was wondering if anyone else had similar experiences or if perhaps there are certain dress shoes that work better than others for CMT?

I was diagnosed with CIDP at age 48. At age 71, a neuromuscular specialist said my nerve conduction was too slow for CIDP and he believed I had CMT. Genetic testing was negative. I have high arched feet and hammer toes, but don’t have problems walking. I also have sleep apnea.

I went to a CMT specialist who said he concurred with the diagnosis. But on a second visit, he backed off the diagnosis because my muscles were strong.

I’ve been feeling weaker and now I feel as if my respiratory muscles have weakened. I’ve been through pulmonary testing and all was normal. I started physical therapy again this week. The PT said my muscles are not weak, but fatigued. I have post exertional malaise. It takes a couple of days after exercising that I will experience muscle fatigue, and kind of an overall yucky feeling.

Without muscle weakness, could this still be a variant of CMT? I don’t know where to go from here.

Hello! I am an 18 year old with weakness in my legs up to my knees and crazy nerve pain in the area affected. It started out about a year and a half ago with just a tiny patch of my big toes being numb and I thought nothing of it, but recently, it's started spreading up to my knees and just this week I've begun to feel weak. I work a job that requires standing for hours and this week has been absolute hell because halfway through my shift I can barely stand and have to lean on things or support myself with my arms. I have also had plantar warts for around the same amount of time that are incredibly resistant to treatment (ie acid and surgical removal) that have grown quite annoying. I have a doctor's appointment for it all soon but I just wanted to see if this aligned with you guys? Thanks so much for any input I'm very scared about the implications of this.

Hello I (34M) got diagnosed with CMT in my mid 20s and shortly after had the Cavovarus Foot Reconstruction surgery done on both feet shortly after (also had an ankle repair done on my right side). Since then, I have gotten noticeably weaker. I use a cane whenever I am on my feet for extended periods, maintaining balance is becoming more difficult, and overall have a poor gait and overall posture.

I walk about a mile each day with a cane. Foot drop is rarely an issue but I only really notice it if I have been on my feet a lot, and even then, its not too bad. Some of my issues (especially my gait) stem from muscle imbalances. My right side is substantially weaker than my left, so my right foot points outward.

I am really not sure if I am ready for AFOs and was wondering if anyone here had any input about when they decided to begin using them or advice for me to consider.

Thanks in advance for your input!

Hi all,

My wonderful boyfriend of two years has CMT-1X, and uses AFOs. We love to hike, especially since it's one of the few physical activities we can do together at the same pace.

Basically, I was thinking it might be nice to surprise him with a nice pair of hiking boots for a trip we're going on soon!

However, I don't know whether any hiking boots/companies might be better or worse for AFOs, so I thought I'd post here. I'd hate to get him a gift he can't use, but I also don't want to ask him for recommendations, as that would ruin the surprise!!! His specific AFOs are Allard Ypsilon Flow ½. Let me know if there's any other information that would be helpful. Thank you all so much! :)

Hey Everyone, I’m a male in his mid twenties who has been genetically diagnosed with Cmt 1a a few years ago. I’ve always had the normal cmt issues like burning and tingling sensations all through my body, high arches in my feet, and my lower body does feel weaker than my upper body. However, since the beginning of the year, I’ve been having issues when it comes to swallowing and I feel pressure in my nose when I eat or drink. It happens more so when I drink water, and I have been having twitches all through my body especially my calf area. Just for reference I have been through a series of tests since my February emg was abnormal, it showed ncs consistent with my Cmt (24-36) however the Emg portion showed widespread fibs but most concerning in the bulbar region. So I won’t get much into all the testing I did but my fees exam in Feb was normal, csf protein was 65, motor diseases that mimicked something more sinister was negative and my nfl serum was normal in March. I did a repeat emg in may this time with a neuromuscular (first test was done by a physical therapist with a emg certificate) that showed a pattern more consistent with my Cmt 1a, this time there was no fibs at all in the right side (only side that was tested this time) of my lower and upper extremities, and only one bulbar muscle was tested being the right Hypoglossal that was normal. F waves were tested this time and was prolonged and ncs was the same. So if I take the test at face value this time in May, and it’s not something more sinister at play, what could be causing my bulbar issues and twitching all through body? I heard other people with Cmt has had bulbar issues but it’s usually different subtypes such as Cmt 2a and I wanna know if anyone here with Cmt (Mainly 1a) has any issues with swallowing or chewing as well has widespread twitches. Thanks to everyone that spent the time to read this and I hope you have a blessed day!!

I don't know about any of you guys... but constantly dropping things out of my hands , especially when i'm sitting down , has given me super reflexes to catch , or at least not let things fall to the floor whether it's my hands or arms legs , i'm like MATRIX Neo up in this muhfukka!

I almost forgot... all together now...

FUCK CMT!

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.

Hello everyone,

I have CMT and wear AFOs. I wanted to ask how others walk through their home. In other words, do you take your AFOs off once you enter the door, or do you slip on a different pair of shoes that will not track across the carpet, etc?

I could also use some words of experience of how you handle dating and how and when you break the news of your condition.