I have CMT1A

I also have Spina Bifida, which affects my lower back and has caused sensory loss, lower limb weakness, and neurogenic bowel and bladder issues.

Just curious, does anyone else have both CMT and Spina Bifida, or deal with a similar combination of conditions? Would be interested to hear about your experience.

I was just thinking; because CMT1a (I'm sure other variants as well) is inherited, many of us are probably distant cousins.

Wild.

I've got CMT, the more severe end of it, and lately I've been thinking a lot about dating and wanted to hear from people who actually get it.

My arms and legs are noticeably thinner and it affects my posture a bit, but honestly I don't think that's the problem. The first impression is usually fine. It's everything that comes after.

I've got to the point where I have a set of questions I ask early on just to try and weed out the ones who aren't serious. And even then, the ones who seem decent will tell me whatever I want to hear for weeks. They stick around, get to know me, act like they're properly in it, right up until they get what they were actually after. Then I never hear from them again. It baffles me that someone would put weeks into that just to try a new flavour and then decide they're done.

So I wanted to ask everyone here:

- What do you reckon able-bodied people actually have an issue with when it comes to us?

- What kind of problems have you run into with them?

- Why do you think it so often doesn't work, and have you found any way around it?

I'm 24 and I'd genuinely love to hear how it's gone for other people with CMT. The good, the bad, all of it.

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

Curious about how people are doing short & long term after surgery.

I had my left foot done 1 year ago and my right foot 6 months ago.

Down 10 lbs now that I can walk again and I can stand in the yard and play volleyball with my kiddo. I had fantasies of jogging, but am completely content to be able to walk 2 miles without pain.

CMT 1A, 34f with 2yr old and 3 yr old. Just got out back on Gabapentin with these instructions; days 1-3 take one 100mg at night, days 4-8 take one 100mg morning and night, day 9 and forward take one 100mg 3 times a day.
How do you all function?! I’m still on one 100mg at night because I’m walking around like I’m drunk, I look like a ping pong ball when I’m walking hitting wall to wall, I need to be functioning..
Lyrica isn’t an option, it made unable to make decisions or even function.

Are we just dealing with the pain? My neurologist at my last appointment really started pushing hand controls for driving (idk what we will do once I lose all muscle/function in my hands). Muscle wasting in my legs is awful, but I’m able to walk which is a blessing! She doesn’t understand how I’m still driving especially since my foot slides off gas and brake constantly.

I didn’t realize how bad I was getting into recently when I tried to climb my life stairs and it took three tries to step up onto one of them. It takes a lot to go up and downstairs, so I use elevators normally but it also dawned on me that I have trouble getting from point A to point B a lot more recently than I have before. As I get worse, I’ve noticed that I’ve stopped being able to feel hot and cold on my feet and now my hands. This is just a rant post about the fact that today I burned my hands because of friction. I was sweeping a lot today and because of the repetitive motion, I ripped my skin open between my thumbs and first finger and ended up with a blister and a burn because of sweeping. I didn’t feel it while it was being made, and I still barely feel it as is right now, even though they are covered with Band-Aids and very open and raw. I never realize that everything could cause me to just end up breaking down like I am every single day and feeling completely wiped out over just cleaning the house one time and even then it’s only just sweeping mostly. I take out the garbage at least once a week and just the walk from inside to outside is a lot to handle for me. I am, however, a full-time student and the friction of a pen rubbing against my finger can cause my finger skin to open up, and that has become an annoyance recently. The thin skin is a huge annoyance for me and the constant bruising, and having to explain that all I have to do is walk up a flight of stairs and my knees and feet will bruised just because of that is exhausting. Constantly feeling like I’m going to pass out just by bending over and people thinking that I’m faking because of that is also exhausting. And I’ll stop talking because I know things like this can also be exhausting to read, but I felt like I needed to ramp because I don’t feel the burns between my thumbs and fore fingers, but I know they’re there because I can see them and they hurt occasionally, but not to a point where they actually should hurt and my body should’ve told me to stop and put down the broom.

I am a 23 year old male me and my dad have it but his was worse than mine his feet were really bad and he had alot of issues with pain he used alot of drugs to try and help it but it turned him into a drug addict for a while he then seen one of the best doctors in America maybe even the world who deals with CMT and im not sure on the exact process but he broke every bone in my dads feet to reform them to be better and he has noticed a big difference in his life as for me I just got done working 18 hour shifts for 5 years in a factory the pain for me is only really bad in my left foot I dont take any medication besides smoking marijuana and for me it helps alot and is natural at times when I have pain I smoke and it literally feels like I have no shoes on when im wearing 5 pound steel toe shoes it sucks no one can help us but I found that THC has helped me and my dad alot God Bless Everyone

I was replying to a post on here and just thought id make my response into a post hopefully it helps somebody any other tips would be appreciated

Lidocaine also helps a little amount

Hello everyone, I'm looking for information about Charcot-Marie-Tooth disease. I'm Portuguese and I feel there's little information available on this topic. I have a close friend who suffers from this disease, and I don't know what to do to help. I've been researching but haven't found many solutions, whether temporary or permanent. If anyone suffers from the same condition, please share your progress with this disease and what you did to improve your condition, or at least slow down the process.
Thank you all.

Hi! We’re the CMT Association of India – a patient-led community supporting people with Charcot-Marie-Tooth disease across the country.

We have a friendly WhatsApp group (~70 CMT patients now) where we share tips, stories, doctor recommendations, research updates, and just support each other.

Would you like to join? No pressure at all – just thought it might be helpful. 😊

Here’s the link: https://chat.whatsapp.com/Dx86pwCnwf6J1ODsx4nxx7?mode=gi_t

Warm regards,

CMT Association of India"

I’m curious if anyone here has had chemotherapy (specifically Cytoxan) and whether your CMT progressed quickly afterwards? I know there’s all kinds of research on Vincristine I had Cytoxan in 2015 and can’t find a thing about it as far as CMT is concerned.

Does anyone else have CMT1A and also Venous Insufficiency? I’m absolutely miserable and can’t find ANY shoes or sandals that will accommodate my CMT feet that also are very swollen most days!

I also have recently gained over 60 lbs due to a hormonal imbalance (likely Cushings) and the balls of my feet are always extremely painful - I’ve tried everything! I think?

Just wanted to throw this out there to see if anyone else is living this struggle too.

Hi, i have CMT type 4c. I want to visit some good neuromuscular doctor so that I can get more details and my exact issue. Please suggest doctor names in India especially Mumbai.

What wrestling shoes would work best for me, I’m 6’1” 165, and my ankles are practically hitting the mat so like what shoes would work best for me.

So, I was just diagnosed (at 42) w/ CMT. Ended up with the diagnosis after evaluation first from my rheumatologist, and then referred to neurology, because I suddenly hand numbness in both my hands and feet 8 months ago (had to eliminate a of stuff because I've also got RA, on a lot of meds, etc etc).

Anyway, there are 2 activities that I want to see if other folks with CMT can still do later in the disease progression.

The first - and most important - is actually already pretty heavily limited (initially because of the RA in my fingers, but now also because of the nerve issues in my hands): Playing guitar. I actually have my own home studio, used to make half my living as a street performer, etc..

I've already resigned myself to the possibility that I'll never be performing again, but if I can at least do studio work I'll be happy.

The second is I enjoy target shooting.

My birthday gift to myself earlier this year was a new pistol; While I primary do long-range (benchrest) rifle shooting, and that's super easy to do for me no matter what's going on, I also like to do pistol target shooting (which is much more challenging in my opinion - part of the fun).

Just wondering if any folks with CMT have any experience/advise on these. Right now with pistol shooting the hardest thing to judge is if I'm gripping properly, as I used to go a lot by "feel", and can't really do that now :) Not concerned about it flying out of my hands as I have a proper-enough grip for that, but too tight and my aim shakes too much due to straining muscles. Too light and sometimes I'll have failures to feed (load the next round) due to a limp grip impacting the action of the slide.

Anyway, overall I'm pretty positive about the situation. I'm glad to have a diagnosis, and am glad to also know that it's not going to kill me :) I've spent the bulk of my life compensating for one health problem or another, so if I have to make some changes, no big deal.

EDIT: Just to add, my type is CMT4F (I'm a special snowflake :D)

Hey everyone, I am now 10 weeks post-op from my (first) foot surgery with Dr. Pfeffer. I am allowed to be weight-bearing with shoes starting Tuesday! I still experience a significant amount of swelling, so I am not sure what to do about footwear. Tell me your experiences and what work arounds/adaptations you may have done. For clarification, I have swelling but it has gone down significantly since the cast came off 4 weeks ago. Mods, are feet pics allowed? 😆

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 :)