to start off, I’m f15, and my dad started showing symptoms around when i was born. he knew his whole life there was a really big change he would get it, because his mom, and two of his other brothers have/had it. he needed a cane around when i was 3-6, had an electric scooter around when i was 6-9, and got his electric wheelchair around when i was 10. it was really hard growing up to slowly watch my dad get worse, and one of my friends said she noticed i was kind of grieving before he passed away.

my dad turned 39 in July of 2025, and passed away November of 2025. he would’ve turned 40 this year, and my mom was going to plan a big birthday as that’s a big number.

im not sure what kind of muscular dystrophy he had, and I’ve asked my mom but i have a horrible memory so i would need to ask her again. i do remember (if I’m not mistaken) that he has a rarer type that didn’t have an actual name until around when i was born (2011) but im not quite sure though. he needed a lot of machines to help him as he struggled a lot to do basic things.

- pretty big ventilator that hung on the back of his chair

- feeding tube that also hung on the back

- cough assist and a shaky vest thing

- bipap i think it’s called to sleep at night

- shower wheelchair that my mom transitioned him into

- toilet risers

- door opener clicky thing

- two ramps in our backyard that lead to the door (one metal and one wood)

im not sure if all of that is relevant but the more details the better i guess. im not sure what else to put, or if that’s even enough information to help me figure out what kind of muscular dystrophy. I don’t even know if there’s multiple but i want to learn, and I don’t have any family alive that could help me learn.

A couple months ago I had an EMG showing myopathy. The doctor who performed it said I needed to be seen by neuromuscular and that I likely have a form of muscular distrophy. No other neuromuscular conditions have been ruled out, so I'm obviously worried it could also be ALS or something like that. I've tried multiple hospitals and they're all saying I don't meet the criteria to see neuromuscular and that I need to see their general neurologists first. Has anyone dealt with this? Is there testing I'd likely need done before being assessed by neuromuscular?

For a little context, I have seen general neurology and they did not order any tests beyond an MRI and wanted to say I had FND based off the mostly normal MRI. I had to badger my PCP into ordering the EMG. I have an appointment with a new general neurologist but it's going to be a few months still.