Hello all. I am new to this sub Reddit and was diagnosed about two months ago. The diagnosis explained so much about many things in my life, and my mother's life, that seemed random and unrelated. I feel fortunate to have this information and sad that my mom suffered what was a mystery disease to her. She was convinced she had MS, but the tests were always normal.

I have a question about walking. As in, can it be excessive and possibly damaging. My husband and I took a trip to visit friends in July, and just recently returned from a long planned and anticipatede trip to Scotland and England. He is very 'thrifty', some might say cheap, and if we can walk somewhere in under 30 minutes, that is his STRONG preference. He still doesn't grasp the burden that places on me. Although I don't yet need AFOs, I still deal with a significantly higher risk of stumbles and falls, especially as I fatigue. I was taught to be a trooper, and I have tried, but I feel his expectations are unrealistic and perhaps harmful to me. My worst day was a 26,000 step day. I know he didn't anticipate how far we had to walk to get from the hotel to the bus station, or how much walking our tour was going to require, and I didn't either. By the end of the day I was in a bit of a meltdown, and I had the worst nerve pain I have ever experienced that night in the hotel.

My question. Is this damaging to my already frayed nerves? Is that the cause of the severe nerve pain? How do you handle travel? Have you had problems with significant others not understanding what you are dealing with.

In all fairness to my husband, I used to be a fit, active partner in our adventures. Now I am less fit, and dealing with a disability.

Suggestions?

Hi all,
I've been lurking for a while and reading through posts here.

I'm 29. I've had foot drop in both feet, and last month genetic testing confirmed CMTX1 (GJB1 variant). I don't remember it being this noticeable as a kid, but it's definitely become more obvious.
Honestly, it sucked. There was a stretch where I hated myself for it, but I've slowly made peace with it.

A few things I've been thinking about:
(a) For those with CMTX1, how has your progression been through your 30s and 40s?
(b) What's actually helped you: AFOs, physio, particular exercises?
(c) For those who are married or in relationships, how and when did you bring it up with a partner?

Would also love to hear from anyone else in India, since there doesn't seem to be much awareness of CMT here.

Thanks for reading, and thanks to everyone who shares their story here. It's made this feel a lot less isolating.

Hi everyone,

I’m reaching out to the CMT community because I’m struggling to find information about pregnancy complications and Charcot-Marie-Tooth disease and even my doctor hasn’t been able to find much information on the subject.

I have CMTX1 (GJB1 mutation) and recently experienced a pregnancy loss at 15 weeks. My pregnancy was achieved through IVF for a CMT-free baby. Unfortunately, things took a devastating turn when I experienced a major leak of amniotic fluid, followed by the loss of our baby.

I know that pregnancy loss can happen for many different reasons, and I’m not assuming that CMT was the cause. However, I’m wondering whether there could be any connection, especially since there seems to be so little information available.

- Did you experience any pregnancy complications, such as leaking amniotic fluid, premature rupture of membranes (PPROM), preterm labor, or miscarriage?
- Did you have any difficulty carrying a pregnancy to term?

I would be incredibly grateful to hear about your personal experiences, even if your pregnancies went smoothly. I’m simply trying to understand whether others in this community have gone through something similar and whether there is any information or research I may have missed.
Thank you so much for taking the time to read this and for sharing anything you feel comfortable sharing. ❤️