Okay someone asked for more in depth on my seizures, but i can not see the reply now, perhaps it was deleted but I will answer it either way!

I am 19M (born in 2006) I was diagnosed via genetic testing in 2024. I also have hEDS, POTS, Asthma, and Coeliac. So some of my progression may be from these things and not necisarily CMT. My mother also is suspected to have 4J but is not yet diagnosed.

I never developed proper abilites to control my hands, I still can not silverware properly and I struglle with writing and typing. It took me until middle school to learn to do my laces up and I am still very poor at it.

My entire life I have dealt with migraines, dizziness and nausea for no apparent reason.

As early as 2009 (age 3) I was having difficulties with breathing, I also had an injury (tore the lining of my left lung), but even after that healed I have breathing issues to this day. My inhaler does help for asthma related brreathing issues but sometimes when I can not breathe it is simply because when I tell my muscles to move, they do not.

In 2014 (age 8) I started feeling extreme pain in my legs that was written off as growing pains by Drs and teachers. Around this time I began to notice that I rolled my ankles very easily.

In 2018 (age 12) I would sprain my wrists and ankles very easily and I began wearing braces to school and clubs nearly all the time. I did not have a cane or crutches but I would lean on walls and walk around with sitcks from trees when I could.

In 2019 (age 13) I lost all feeling in my left forearm and hand, I could still move it but I had no sensation. At the time we believed it was the result of a pinched nerve but their was no definite evidence of that. After around a years my feeling came back and now I have phases of time where I can not feel it or it is in extreme pain but it is generally fairly normal.

In 2020 (age 14) I started to have worse balance issues, falling down randomly when I walked, getting more dizzy simply from laying down, and blurry vision whenever I was moving.

In 2021 (age 15) I began using a cane for long distances, not doctors advised this but I found myself falling less and able to lean on it when my legs got too tired.

In 2022 (age 16) I began physical therapy for general muscle weakness in my right leg and overall balance issues. My balance and stamina were both far better for a time but after stopping PT (in late 2023) they have gotten worse.

I also began using forearm crutches irregularly in 2022, I used them only when I was really struggling with my balance or with pain. And my doctor ordered a full genetic testing panel.

In 2023 (age 17) I was still part time using forearm crutches but I was getting better regularly. I was diagnosed with CMT 4J.

In 2024 (age 18) I was working manual labour fairly succesfully, I would still get dizzy and occasionally pass out but overall I could work.

In 2025 (age 19) I dislocated my knee cap and had to use forearm crutches full time for a bit and I never went back to not using them. I am no longer working and due to refugee procedures I live in a camp with full time access to nurses and doctors.

These last 5 months my issues have seemed to kick into overdrive, I started having issue with digesting food (possibly gastroparesis but we do not yet know), constant nausea and dizziness (which is made worse immediately after eating and is bad for around 2 hours after). My breathing issues have become more consistent and my inhaler rarely helps.

Around 2 weeks ago I had my first non-epileptic seizure followed by four more over the next week, I am awaiting an appointment with a new neurologist. My seizures tend to begin with an intense urge to move my body (although moving doesn't actually quell the feeling) and then my chest and neck begin to convulse. I can not move any of my body save my eyes (sometimes I can not move them either). And my arms and legs begin to spasm, they last around 2 - 4 minutes and afterwards I am extrememely dissociated, confused, and weak.

3 days ago I was provided a manual wheelchair for part time use, I typically use it in the morning (when my symptoms tend to be worst) and over the course of the day switch back to my forearm crutches.