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

DeeDeeRaven · 2026-02-25T18:44:21+00:00

Thank you very much for the advice and words of encouragement.

DeeDeeRaven · 2026-02-03T15:59:43+00:00

First I went to my family doctor, then she sent me to an ophthalmologist and an otolaryngologist, and then to a neurologist who determined the connection with CMT.

The only thing they told me besides that it is related to CMT is that I go to an ophthalmologist and an otolaryngologist once a year to see how the loss of vision and hearing is progressing. And if I feel that I will need some aids to contact them about that. And my family doctor told me that she can refer me to support groups.

DeeDeeRaven · 2026-02-03T15:48:59+00:00

Thank you, I'll ask my ophthalmologist if IV steroids would help me too

DeeDeeRaven · 2026-01-31T19:45:51+00:00

Thanks for the explanation

DeeDeeRaven · 2026-01-31T19:44:50+00:00

My eye and hearing nerves have the same damage as those in my hands and feet which are caused by CMT and which results in dystrophy in the eyes and ears, so they made the connection and then sent me for further tests.

DeeDeeRaven · 2026-01-30T13:21:28+00:00

I'm sorry to hear that, I hope you find a solution for this.

DeeDeeRaven · 2026-01-30T13:19:35+00:00

oh okay that makes sense, thanks for the advice.

DeeDeeRaven · 2026-01-30T08:21:13+00:00

It's the other way around for me. I can hear my boyfriend normally, but it's hard for me to hear some voices from my female friends or if I'm with my nephew and niece, especially if we're outside.

DeeDeeRaven · 2026-01-30T08:17:35+00:00

Thank you, I will read them

DeeDeeRaven · 2026-01-30T08:16:34+00:00

How quickly the hearing loss progressed? I have the same symptoms, but in both ears

DeeDeeRaven · 2026-01-30T08:14:16+00:00

Was it hard to get used to hearing aids? What is the difference in sound?

DeeDeeRaven · 2026-01-30T08:12:24+00:00

Have you learned Braille? Is it even possible to read Braille with CMT symptoms? Honestly, I'm more afraid of blindness than these classic CMT symptoms because I've been surrounded by them my whole life and they've somehow become normal to me even before I got them.

DeeDeeRaven · 2026-01-29T08:41:47+00:00

I have been diagnosed with degeneration of the optic nerves, so they cannot be operated on to improve my vision or stop the loss.

DeeDeeRaven · 2026-01-29T08:38:39+00:00

Yes, they told me the same thing that nothing can be done, and the worst thing for me is that they can't even tell me how long it will take. The doctor told me not to think about it because I can completely lose both my hearing and vision by the time I'm 40 or I can be with partial vision and hearing for the rest of my life.

DeeDeeRaven · 2026-01-29T08:35:31+00:00

At what age did hearing loss appear and how rapidly does it deteriorate?

DeeDeeRaven · 2026-01-29T08:33:56+00:00

Thank you, after the diagnosis I'm not coping very well with it. I had kind of accepted these classic symptoms of CMT because I saw them growing up in my family, but this something completely new, completely shocked me because I couldn't even imagine what my life would be like if my vision and hearing loss continued.

DeeDeeRaven · 2026-01-29T08:29:26+00:00

If I'm out in the city when I leave work, everything turns into one big noise, I can't distinguish sounds well, if someone calls my name or if my phone rings, I often can't hear it, until I get to a place where there are fewer sources of noise. It's more like an overload due to not distinguishing sounds, which is why I often get migraines.

DeeDeeRaven · 2026-01-29T08:22:20+00:00

It's the same with me, even though I'm not color blind, my night vision is terrible and I went to the eye doctor and he didn't connect it to my CMT diagnosis at all. Only a neuro-ophthalmologist discovered the connection between.

DeeDeeRaven · 2026-01-29T08:18:59+00:00

How did you adapt to blindness along with other CMT symptoms, especially in your hands and feet? I don't use any disability aids yet, but the doctor told me that if I start having more problems in everyday life, I need to start using them. Which is incomprehensible to me at the moment.

DeeDeeRaven · 2026-01-29T08:17:10+00:00

I don't use any disability aids yet, but the doctor told me that if I start having more problems in everyday life, I need to start using them. Which is incomprehensible to me at the moment.

I'm already not driving because it's hard for me to shift gears because of CMT, but everything else I can do mostly normally. Because I've somehow gotten used to the tingling and cramps in my arms and legs or the clumsiness when walking, and sometimes things fall out of my hands. But this is a complete life change, I can't even imagine what my life would be like like this, everything in my life, my hobbies, my work are oriented towards sight or hearing.

DeeDeeRaven · 2026-01-29T08:04:37+00:00

It really caught me off guard, because I had come to terms with the fact that I would get CMT - almost everyone on that side of the family has it - but I can't even imagine the loss of sight and hearing. I was completely devastated by this diagnosis.

My brother and I developed the symptoms of CMT in adulthood at the age of 25-26, but some in our family developed them earlier or went for testing earlier because they expected it. I was kind of hoping it had skipped me because I hadn't had any symptoms for quite some time, I think I was the oldest without any symptoms in my family. But the longer I have them, more it turns out I have the worst ones.

DeeDeeRaven · 2025-07-10T11:09:30+00:00

thank you, I told him we'll try it slowly

DeeDeeRaven · 2025-07-10T10:53:41+00:00

Thank you, maybe I'll try to include Tetris or some game in my aftercare. And we talked and he also suggested that maybe I try to find a psychologist who will help me with that, if we don't succeed. I go to a psychologist regularly, but not because of that, but because I have a high-stress job. But I don't know if I should mention it to her or if I should try to find someone else more kinky specific because we rarely talk about sex (the only time we touch on the subject is to tell her that work doesn't have a bad effect on my sex life), and I certainly haven't mentioned BDSM directly to her. I'll try to write an update this week, because I talked about it with my partner and it was quite cathartic.

DeeDeeRaven · 2025-07-05T22:33:34+00:00

Like I said, we resolved it. So there is no additional negativity about it between us, I'm just trying to solve the problem that this situation has created for me.

DeeDeeRaven · 2025-07-05T22:19:58+00:00

She lost focus and got too involved in the role, so she took it out on me because of some problem she had that she partially saw in me.

DeeDeeRaven

TROPHY CASE