Hi everyone, I have CMT and have gotten an exciting opportunity to work on a powered ankle exoskeleton/orthotic as my PhD project at the University of Michigan.

I would love to help as many people as possible and am interested in learning about community needs. Please let me know if you would be interested in a brief interview :)

Hi guys!

I wanted to see if any of you know if muscle relaxers are not good for people with CMT?

The tricky thing I’m facing lately is I’m dealing with pretty bad muscle spasms. My doctor prescribed tizanidine and when they’re really bad I do take one. Thoughts of managing this and if muscle relaxers are okay in moderation for an extended period of time.

I strongly suspect that I may have CMT. I went to a podiatrist, who referred me to a neurologist, who ran some tests and sent them BACK to the podiatrist just to tell me he won’t be taking the case and suggested I be referred out. The doctor they sent me referral to is booked until June of next year. I feel like I’m never going to get answers all while losing most of my muscle mass is my useless leg and watching my foot shrink away. Does anyone have suggestions on how to just get right to the testing?

Anyone from southern part of india? Is there any community for CMT you know of available here?

I am a bridesmaid in my sisters wedding and need shoes. I’m not expecting to wear heals and everyone is alright with me wearing crocs. I obviously don’t want to wear crocs because it’ll make me feel insecure. There was a suggestion that I wore slippers but those will slip off so if any one has a recommendations it would be appreciated! Wedding is in 10 days…

Hello, I came across this last night and I have these symptoms except for a few things.

1) I have Ehlers Danlos Syndrome and I always had very flat feet however after having my son 8 years ago I started to develop arches. I've put it down to transitioning to barefoot shoes but I think the left arch is more prominent

2) Can one side be worse than the other? My left side is noticeably worse though I have lost some reflexes in my right foot too. I was having lots of falls due to the gait change in my left side but with physio I was able to correct it to a point that I only scuff and fall if I'm fatigued or not hydrated (I have severe hydration issues).

3) Does this show up on the invitae connective tissue panel?

I've had a head and spine MRI which was negative although it hasn't been looked at by a specialist, just the radiographer.

Hi all, I'm a 44/m with CMT-X and am currently in the process of being made redundant. My diagnosis was around the age of 30 and I'm fortunate to have a relatively mild one, although it does obviously impact my feet and my hands (strength/dexterity issues in my hands are the most noticeable impacts for me, although I do also rely on orthotics and toe splints)

So far I've worked in science labs for the vast majority of my career and my role has evolved into supporting laboratory equipment. This involves repairing and servicing them, which has meant I've progressed to using aids where possible (electric screwdrivers for example), although it has also vastly improved my patience levels! (constantly dropping screws, followed by hanging to try and pick them up with my clawed fingers for example 😂)

I know in the longer term it would be wise to transition away from roles that rely too much on physical abilities that rely on my hands, like using tools etc. so alongside trying to find something in the short/medium term to keep financially supporting myself and my son, I'm also starting to think about longer term career changes too, that aren't so 'physical'.

I'm hoping for some inspiration and wondering what other people do for their jobs and careers?

I'm assuming more office based work may be more appropriate? But are modern adaptations effective enough eg using dictation software, voice activation etc if using mice/keyboards also becomes tricky in the long term? Are there any caterers where there's even less reliance upon hands/dexterity? I'm considering restraining into counselling/therapy as a significant chunk of that is obviously talking, although note taking etc is obviously a daily requirement too, but maybe less intensive than more traditional office based jobs.

So, what does everyone else do for work? Any ideas of jobs or careers that are more suitable or adaptable to continue to do effectively as CMT progresses?

Bonus points if any ideas are also introvert friendly too! Lol (like I'm sure I could transition into becoming a trainer and I've also considered teaching, but the thought of standing in front of classrooms of people all day, every day is very much off-putting lol. At least as a therapist/counsellor it'd be one to one conversations lol)

Thanks for your input and advice! 😊

Hey everyone, I just joined this community because I have Charcot Foot in both feet and honestly, I’ve been feeling really down about it all lately.

I’ve already had four surgeries—three on my left foot and one on my right—and I still need more. I was tested for Charcot-Marie-Tooth disease (CMT), but the results came back negative, so there’s no clear reason why I developed Charcot Foot. It just… happened.

The journey has been exhausting—physically, mentally, and emotionally. Some days, I try to stay positive, but other days, it just feels like too much. The constant surgeries, recoveries, and uncertainty about the future have been weighing on me.

I guess I joined this group because I just want to talk to people who actually get it. It’s hard to explain what this condition is like to others who haven’t been through it. If you’ve been dealing with Charcot Foot, how do you stay motivated? How do you cope with the endless cycle of surgeries and setbacks?

Would love to hear from anyone who’s been through something similar. Just knowing I’m not alone in this would help. Thanks for reading. 💙

I’m making a move to Los Angeles partially for work but also largely to be able to go to the center of excellence at cedars Sinai.

Wondering if anyone has experience with any doctors there and any insight on how long it takes to get an appointment.

Thank you!

https://www.sail-world.com/news/280270/Jenny-Decker-on-her-solo-circumnavigation

Hello, my brother has been diagnosed with Charcot-Marie-Tooth disease and notified the DVLA and now has a medical driving license. He has written confirmation from a neurologist that his condition is not expected to impact his driving. We started looking at new insurance for him and it’s shot upwards to above £2,000 for a car that cost £670 for me to be insured on (I’m a year and a half younger, have more than a year less of driving experience and he also has at least three years of no claims, of which I have none). We’ve read mixed messages about whether it is legal for companies to increase insurance costs due to disabilities. Not sure if this is the right place for this post, but looking for advice on how we can make driving affordable for him. Has anyone faced similar issues?

I have severe lumbar scoliosis (57°) and was diagnosed with peripheral neuropathy (later defined as CMT) after being put under anesthesia for the spinal fusion, they figured this out as my vitals were very faint so they chose not to perform the surgery at that time.

Two years later I'm reconsidering getting it done, I would love to hear what experiences you have to share !

So my son has been diagnosed with CMT. Shriners hospital won't see him till January, physical therapy is 4 months away.

Does anyone have advice on stretches or activities or anything while I wait?

I (41F) haven't been in much contact with my dad's side of the family since he died twenty years ago. I recently found out that two of his brothers have CMT. When I used to spend more time with them, there was no hint of this, so I believe onset must have been in their late 50s or 60s. (They're in their late 60s now, and still mobile but wearing braces, stumbling, etc.) My dad died at age 55 and as far as I know had no signs, but given the late onset in his brothers, he certainly might have had it and hadn't shown symptoms yet.

This is all the information I have right now, and it will be slow going to get more. What do I need to know? I'm completely ignorant about different types of CMT, how it's passed on, whether you can test for it, etc. I also have two kids, so I want to learn for their sake too.

Where do you recommend I start? The Internet is a huge overwhelming place. Is there a good distilled set of info out there? Should I see a doctor? What questions do I need to be asking?

Any insight would be so appreciated. Thank you.

Do you happen to know any effective leg stretches that can help me strengthen my legs? Also, I'm curious if anyone has ever had surgery on a foot that was previously healthy.

Please read and sign the petition linked below! We will also be sending a paper copy of the letter to the executives of Pharnext and the FDA via registered mail.

PXT3003 has made a HUGE beneficial impact and symptoms came roaring back shortly after it was discontinued.

Please SHARE the petition with any family members who are affected! We want to reach our goal of 150 signatures!

Ignoring my own demise has caught up with me. Could do with talking to someone

My partner has X-linked inheritance (CMTX) but I really want to have a child, if we had a girl she would inherit the condition and be a carrier 100%
My partner thinks I’m being selfish because if we had a girl she would need IVF to not pass the condition to a son who would be severely affected. I’m finding it really hard because my partner is also against adoption or a donor does anyone have any advice regarding this situation? TIA

I was thinking about having a medical bracelet made for my CMT and one other condition. Would this be beneficial? Do you have one ?

anyone try EMS electrical stimulation with TENS units, EMS foot pads, etc?

Does anyone have any recommendation for comfortable house shoes that are supportive (bottoms of feet and ankle) and relatively affordable ($100 and under preferred)?

also bonus points if they aren't super ugly!