CMT X1 Female

[maggiepl88]

CMT X1

Does anyone suffer from CMT X1?

I am a female in my 30's and 2 yrs ago I found out about my CMT.

Its a spontaneous mutation , nobody in my family has a history of CMT

[Strawbs1]

Hi. Yes, I have CMT X. Diagnosed in my thirties, after my first child age. My brother also has the condition but we’re not aware of past generations having CMT. How are your symptoms?

[maggiepl88 in reply to Strawbs1]

Hey, thank you for your reply.

I have a foot drop in my left leg and my right leg is much better. I’m not wearing braces yet. I’m not tripping or falling. My doc suggested not to use them yet. I have muscle dexterity in my lower legs ( they were always skinny) and hands. I do feel okay, no pain etc. just worried about my future :(.

How old are you now? What are your symptoms? How is your brother feeling?

[Strawbs1 in reply to maggiepl88]

Symptoms have worsened in recent years, wondering if linked to menopause.

[Strawbs1]

Hi. I’m 48 now. Symptoms are assymetric, so right side is much worse than left (brother is affected both sides). Have been using boxia on right foot, can’t remember how many years now, but I’d suggest waiting as long as possible. It’s good to keep the muscles working. I’m doing regular exercise (gym) and a clinical Pilates class, which is really beneficial.

[maggiepl88 in reply to Strawbs1]

Hi,

Thanks for your reply.

I’m 32 now. I stopped going to the gym for almost a year due to my first pregnancy. I just got back and I’m trying exercise few times a week and I’ve Been doing Pilates as well.

My doc suggested same thing, wait with braces.

Please tell me what you mean your symptoms have worsened? Do you have pain? Muscle dexterity? Do you have hammer toes ( I do have them since I can remember but I didn’t think this might be a sign of any disease) Etc? There is not a lot information for cmtx1 . Is your brother walking? Or is he wheelchair bonded? Do you have any tips or recommendations?

If my asking to many questions I’m so sorry. I just don’t know personally anybody with cmt. I have 3 siblings and my parents, grandparents are still alive and they have zero cmt symptoms. My doc thinks I just have a spontaneous mutation. I’m trying to live normal life but sometimes it’s not that easy and I feel down.

[Strawbs1 in reply to maggiepl88]

So, it’s mainly foot drop and weakness in hand, both right side.

Dexterity is an issue, fine motor skills, jars and buttons can be a little tricky. No wheel chairs; my brother walks a lot whereas I prefer the gym...short bursts are better for me as long distance walking exacerbates fatigue.

[maggiepl88 in reply to Strawbs1]

I’m glad to hear that you both can walk!

Thank you for your reply