u/merlins-daughter

First, sorry in advance if I get a bit rambly. My brain fog is acting up and I'm having complicated thoughts and feelings about this.

So, I got diagnosed with FND a couple of years ago. My symptoms aren't the worst, but they have made it so I can't work full time and they are getting worse and have stopped me from working.

My neurologist isn't the best. He did the brain wave test to see if my dissociative seizures were real seizures or not and then looked at videos I sent of the sudden body movements. He didn't see me in person before giving me the diagnosis. When things started getting worse, he saw me in person and did the Hoover Test and I tested positive. He said that proves the diagnosis is right and wants me to continue our "treatment plan".

The so-called treatment includes CBT and that's it. Nothing to assist with pain or stopping my body jerks. No follow up appointments. Just CBT. Sorry, had to vent a bit there.

Okay, so... As mentioned, my symptoms are getting worse. From my understanding (and my therapist's understanding), FND is not a progressive disorder. I already have an appointment to get a second opinion and recently ending up in Urgent Care because my left arm decided to stop working for a few days. My current neurologist just asked for more videos and said to continue CBT and the Urgent Care doctors were very frustrated I have not had an MRI (I felt seen and heard by them and it was great).

What I'm asking this subreddit for is help preparing for my second opinion appointment. I'm going to create a Venn diagram of symptoms for FND and MS. I'm trying to brainstorm symptoms that are uniquely FND and not MS. I know it's a very open ended questions and I have also been Googling a lot, but Google has been not the best because of the AI junk.

I'm also going to be positing in a MS subreddit asking the same thing.
And just to be clear, if it actually is FND that is my diagnosis, I will be okay with that. I will be a lot more pushy about getting actual help though.

I have major sensory issues and get headaches easily. My partner also uses a CPAP and can't think of anything to help me.

So, when I try to use my CPAP, it fails horribly. The pressure from the headgear on the top/back of my head gives me such a headache that I start dry heaving or even vomiting. I have tried different tightness and even different styles of headgear but nothing has worked. I have also tried sleeping in different positions (on my side, sat up, on my other side).

My doctor suggested using a Bella mask, but I can't because I have a deviated septum and chronic congestion so breathing through my nose is not possible most of the time.

My score is very low so I'm not in danger if I don't use it, but my sleep is worse. I have been trying different things for over two years.

Wondering if anyone has any other suggestions.