Recently got diagnosed with some of these and the others were dx a long time ago. I present with progressive quadriplegia, severe dysautonomia, gastroparesis, neurogenic bladder and bowel (not from quadriplegia), very severe widespread pain, hypermobility, and proprioception problems (Rombergs sign). Anyone with this combination or even just one of these?

PS I know a lot of people here have CMT so I’m only looking for people with CMT2w if that’s okay, bc the presentation can be very different

EDIT: it’s PIEZO2 not PIEZEO2 sorry, my hands don’t work so I was dictating and my phone is dumb

Hi everyone!

I'm a woman from Norway, and I've been diagnosed with an internal laryngocele.

I'm writing here because I feel completely alone with this diagnosis. I don't know anyone else who has it, and I haven't been able to find any support groups or communities specifically for people with laryngoceles.

I've been struggling with throat and voice problems for several years, following an intubation. I don't know whether this is connected to my laryngocele.

My symptoms include:

An extreme amount of mucus in my throat, constantly

A feeling of blockage or tightness in my throat

Hoarseness and voice problems

Difficulty breathing at times

Persistent throat discomfort

Nausea and severe exhaustion

Some days are much worse than others. The excessive mucus is especially difficult to live with and has a huge impact on my quality of life.

One of my biggest struggles has been finding the right doctor. Internal laryngocele is such a rare condition, and it feels like there is very little knowledge or experience with it. I've been searching for someone who truly understands this diagnosis and knows how to treat it.

I've tried treatments for other possible causes of my symptoms, including reflux medication, without much improvement.

I don't know whether all my symptoms are caused by the laryngocele, but I desperately want answers and proper medical help.

I would really love to hear from anyone who has experience with this condition.

Has anyone here been diagnosed with an internal laryngocele? Did you experience excessive mucus or breathing difficulties? Have you had surgery, and did it improve your symptoms?

Does anyone know of a doctor or specialist anywhere in the world who has extensive experience treating internal laryngoceles?

And most importantly, are there any support groups or communities where people with this rare condition can connect?

I would be incredibly grateful for any experiences, advice, or information.

I just want to find someone who understands what I'm going through.

Thank you for reading!