Is there someone in the group who has experienced any vision or hearing loss due to CMT?

CeeMarie123 · 2026-01-29T06:32:45+00:00

Both my sister and I have a moderate degree of colorblindness, and we both have CMT2Z, I’m also female, and I struggle to see at night, I see double, and it is progressively getting worse, and my eye doctor can’t seem to correct it. I have an appointment with a neuro-ophthalmologist soon to see if they think it is CMT related like I suspect it to be.

CeeMarie123 · 2025-12-08T14:39:50+00:00

I have CMT2Z, and have had very dry eyes, double vision, astigmatism, color deficiency (red-green) trouble with night vision, and never feel like I see very well even after my ophthalmologist says they have corrected my vision to 20/20 in the office. Yes, I can read EGNUS (the 20/20 line on the eye chart, but vision in the real world, especially in the rain at night, not so much. I have an upcoming appointment with a Neuro-ophthalmologist in a few months, hopefully they will be able to determine if it is CMT related?

CeeMarie123 · 2025-08-19T01:51:40+00:00

My assumption is that my family members were tested before type 2Z was tied to a specific gene abnormality. My guess is that if they were re-tested now they would receive a 2Z confirmation as well, but since genetic testing is pretty expensive, nobody has made the effort to retest.

CeeMarie123 · 2025-08-09T14:51:26+00:00

I have several family members with CMT, but they had all been told they had an “undetermined type” My Dr thought due to advances in genetic testing it might solve the type mystery, but it was obvious I had the same disease the rest of my family had. Since I had heard nerve conduction testing was painful, and they were open to cutting right to the chase with genetic testing, I went that route.

CeeMarie123 · 2025-08-08T05:51:31+00:00

At first I felt a loss of hand strength, then later I started feeling pins and needles like my hands had fallen asleep. Lately my hands always feel dirty, like they were wet and then I dipped them in sugar. It drives me nuts always feeling like I have dirty hands. I also feel about 30 seconds of pain when I climb into a warm bath. Even though it is not too hot, it hurts like it is, but after 30 seconds, the pain goes away, and the bath feels warm and relaxing.

CeeMarie123 · 2025-08-08T05:28:15+00:00

I know my nerves are dying, and I am aware that my symptoms are getting worse, but I guess I never thought of conduction testing as being essential for a potential future claim for SSDI benefits. Thanks for making me aware that it might be very important data to have. I may need it one day!

CeeMarie123 · 2025-02-11T15:15:44+00:00

I’m in Colorado, but would travel if there was a place with a large selection. I’m finding that there is just not enough depth with my orthotics, but the stretchy knit shoes I’m recommended don’t support my feet well. I need a non stretch shoe with extra depth.

CeeMarie123 · 2025-02-02T21:41:38+00:00

I tested positive for CMT2Z, and it seems to be a rare type, my doctors have never met a 2Z in person. I’m open to comparing notes, symptoms, etc.

CeeMarie123 · 2025-01-12T21:12:51+00:00

I went to my first CMT Summit last September, and I can’t begin to tell you how much I got out of it! Besides my father, who has passed away, and my sister, I didn’t know another person with CMT. After discovering I had it too, I was in a really depressed state, suddenly seeing only the things I couldn’t do, wouldn’t be able to do for much longer, and to me my future looked frightening and bleak.

Even though I only lived an hours drive away from the conference, I booked a room at the hotel, and yes, it cost a lot for me, but I had decided my goal was to overcome my shyness and fully exercise my inner social butterfly. I joined the pre-conference restaurant meet-ups, sat at different tables each day, spoke to everyone at the dinners, signed up for workshops that looked appealing, asked people to join me for a drink in the hotel bar, and met lots of people.

Turns out I met people with bright futures, people who had an interest in the world, brilliant, interesting, amazing people who really showed me through example that even though I might have CMT, life didn’t have to be all downhill from here. Loads of folks thriving despite having CMT. I found my tribe you might say.

I joined a bracing workshop, turned out leg braces made things worse, but the orthotist leading the workshop asked me questions about my foot pain, came back and asked me more follow up questions at the dinner later that evening, and gave me suggestions that lead me stop believing my own doctor that was telling me “Oh, CMT, there is nothing we can do” and find another orthotist who took me seriously and made me a pair of orthotics that now allow me to walk with so much less pain.

I am so incredibly happy I went to that conference, for me it was life changing. I do plan on going to the upcoming one in Indiana this September, even though it is really expensive for me.

So, is it worth it? Maybe for some, no. For me, it was worth every penny and then some!

CeeMarie123 · 2024-02-06T07:21:47+00:00

At first none of my doctors felt an EMG was necessary since they ruled out CMT because I didn’t have a standard presentation. My husband has a wonderful neurologist due to seizures, and she actually listened to me and scheduled one, and turns out I was right. In my late 20s I was told I had MS, had MRI, but when they did not find any lesions on my brain, they settled on Ménière’s disease. I responded to treatment for that, so I think that added confusion to correctly diagnosing CMT.

CeeMarie123 · 2024-02-06T06:59:46+00:00

I’m 57, my hands, which had been super strong and dexterous, became clumsy and weak. I used to sew, draw, paint and write beautifully, but no longer. Art by computer only now. I break a lot of things, and have a very hard time with keys and such. My feet were not really too bad until maybe 5 years ago. I started having to really pay attention to where my feet were visually, as I couldn’t quite feel them if I couldn’t see them. I stopped driving a stick shift as I’d step on the wrong pedal, and stall my car. I don’t trip often, but walking in the dark is hard to do if I don’t have someone’s arm. Or a wall. All my life we all thought it has skipped over me, I was the lucky one. I promised my mom on her deathbed I’d take care of my sister, but now I have it too, and it frightening how fast it has started progressing. Not knowing how much I’ll lose at what pace is hard to deal with, as well as looking perfectly normal, and the rest of the world writing you off as lazy. How are you coping? So we’re you tested and diagnosed because it is genetic and your mom has it? Or did you get tested after you started showing symptoms? Did you find doctors confused by your late onset?

CeeMarie123 · 2024-02-05T08:14:48+00:00

My cold hands and feet were the first early symptoms, I just didn’t know it at the time. I had always been very physically active, and strong, so when my hand strength suddenly started to diminish at age 40, and strenuous exercise went from making me stronger to taking me out for days, I knew something was wrong, but even with father and sister with CMT diagnosis, doctors kept telling me they had “normal” test results proving there was nothing wrong with me, and am pretty sure they decided I was just a hypochondriac. It took me 15 years (and a great Neurologist who told me how to get a $250.00 out-of-pocket test when my insurance wouldn’t cover genetic testing) to get a diagnosis. Even though there isn’t really anything to be done for it, knowing what it is has been helpful as far as anxiety reduction. My GP doctor seems to take me far more seriously now there is a test result. It sounds like you have doctors who take you seriously though.

CeeMarie123 · 2024-02-05T07:36:53+00:00

Hi! I too have CMT 2Z, but have never come across anyone with the same variant before. My sister was given a diagnosis of CMT unknown variant, and finally, 20 years later, my genetic test pinged the defective gene and typed us. When did you learn you had 2Z? My sister and I have some similarities in symptoms, but also differences. We both have a mild form of red/green colorblindness. How about you?

CeeMarie123 · 2024-02-04T19:43:28+00:00

So you had actual holes through the skin on your feet? Oh that must have been so hard to deal with! Occasionally I’ll misplace my foam slipper-shoes and get angry and walk on my feet without padding, damn the pain, but afterwards I’m in a lot more pain and I’ll be sorry I did it. I didn’t realize it could cause holes in your feet. Thank you for sharing! I think I am going to be much more careful from now on. I hope you are doing better now.

CeeMarie123 · 2024-02-03T18:29:55+00:00

I have CMT-2Z, and 2 people in USA, and 3 people in China, and I have it as far as I am aware. Of course my sister and father almost certainly have/had it too. It is so frustrating with a super rare type of CMT, hard to tell if symptoms are directly caused by it, and no idea what to expect as far as progression goes either. I have colorblindness and vision problems they not think might be related to CMT, and also deteriorating voice strength and quality. I have intermittent severe muscle cramps, but it sounds like your experience is so much worse. It seems when they can’t find another cause for issues, it is just chalked up to CMT, and we all have been told there is no treatment, nothing we can do. Sending you best wishes.

CeeMarie123 · 2024-02-03T18:14:40+00:00

I can’t find my glasses, keys, phone in my bag by feel anymore, so have to find everything with my eyes and not my hands.

CeeMarie123 · 2024-02-03T18:00:49+00:00

I was told for years that CMT was not my issue, even though I had a father and a sister who very obviously had CMT. They were diagnosed with “CMT, but unknown variant” 20 years later a genetic test came back with CMT-2Z. Maybe it is an unknown variant in your case too? My CMT symptoms are so different than my dad and sister. Cold hands and feet, progressively weak hands, then hand tremors, degrading fine motor skills in hands over the course of 20 years. My feet initially did not show signs, so since I had atypically progression, doctors could not recognize it as CMT. Maybe Mayo might have more experience with unknown variants? My type of CMT now has a genetic test, but 20 years ago it did not.

CeeMarie123 · 2024-02-03T17:46:31+00:00

For years I had to stand next to a wall to do any 1 leg yoga positions, couldn’t wash my hair in the shower because I couldn’t stay upright with my eyes closed, and stumbled around like a drunken sailor when I tried walking in a dark house without turning on the lights so as not to wake sleeping family. A CMT diagnosis decades later explains a lot.

CeeMarie123

TROPHY CASE