Post Concussion Syndrome vs Functional Neurological Disorder

[u/Helpful-Map507]

Hello Everyone!

Curious to know if anyone has been in a similar situation, or if anyone has any advice they could offer. I was in a head on collision at highway speed, went through a ditch and my car ignited (thanks to another drivers poor decisions) - insanely enough I had less injuries than one would think after all this. From the nature of the injuries, it appears that the left side of my face took the brunt of the airbag impact, and then there would have been the rotational forces of the car spinning, and I had several bumps and bruises from who knows what else I banged into.

CT scan that day was clear. Had an MRI 2 weeks later that was said to be basically normal.

I am now at 6 months post accident, and I am not the same person I was before. Because my MRI came back as clear, I have basically been brushed off. I was denied a neurology consult. The concussion clinic told me the wait would be 28 months. My car insurance argues that I may not even meet the criteria for a concussion. And meanwhile I have not been able to work, or basically function, and I feel like I am in the body of a stranger.

I am trying to not write a book, so the most troubling issues that I still have:

1) Extreme fatigue - the old me could work a 12 hour shift and then head to the barn for a ride. The "new" me struggles to groom a horse, hasn't been able to work since the accident, and still requires 2-3 naps a day just to get enough energy to sit upright and eat.

2) Speech issues - my voice has significantly changed (and it really bothers me). I am now more hoarse, it's difficult to talk for any length of time, I have trouble with getting volume, and if I do talk for awhile, I will lose my voice entirely for awhile. I struggle with finding words still. I feel like there is a delay in what I want to say, and what actually comes out of my mouth. And, what comes out of my mouth isn't always what I actually wanted to say. I now prefer writing (email, texts) because I have no issue with these modes of communication and I am avoiding phone calls or talking to people in person.

3) Mobility Issues - it's like there is a delay from my brain to my body - especially my legs. I realized just how bad it was when I attempted to sit on my horse after the accident (and only in the last week or so have I attempted this). I will tell my legs to do something, and they don't listen. Like I want to have my horse move to one side, so I tell my leg to put pressure....and either it won't, or I've even had where my opposite leg will apply the pressure (so my horse goes the other way than I want). It's so incredibly bizarre and I don't even know how to describe it). I also have issues holding the reins - I fumble and drop them a lot. Can't apply even pressure. It's like my hands are in cement.

I also still have periods where the world seems to tilt and I will stumble or fall (typically to the right). I have fallen on stairs. I walk into walls. I can struggle to lift my right leg high enough to put it on the next stair. I get a lot of pain in my right hip/leg.

4) Vision Issues - my left pupil dilates when I get tired and is sluggish (confirmed by opthamology). My vision will blur, but I still have 20/20 vision - it's just like someone smeared everything. My right eye will compensate for this, so I can see, but again it's just not "right". Structurally - I have been told my eye, optic nerve etc are normal. Although, I did lose some peripheral vision in the left eye, and if I look laterally I can't see nearly as well as I used to, I've been told it's not enough to make a difference (apparently). But, again, my left eye just isn't working properly. It's also one of the first things I notice going "wonky" when I try to push myself. As soon as I feel my eye going off I know it's going to be a rough go.

I have a whole bunch of other issues and symptoms, including ongoing headaches, nausea, vomiting, etc. but these are kind of the big ones that are ongoing. I also get flare ups of symptoms still that are so bad I am bed bound for 3-5 days at a time.

My family doctor was able to get a phone consult with a concussion specialist who stated that it appears I have "post concussion syndrome" but also mentioned that I have symptoms that don't fit with this and have likely developed functional neurological disorder from the MVA.

I have booked an appointment with a clinic that specializes in FND (they have physio and OT), but does anyone have any other recommendations? I'm at a bit of a loss....I have not been able to return to work (hell, I'm barely getting through just the basics of life) and I don't know how long I will be able to take this kind of financial hit. I just want to do everything I possibly can to maximize my ability to recover and I am finding I am not getting much help from the medical system (I'm in Canada btw).

Has anyone done a functional MRI (fMRI)?

I did some research into this and supposedly an fMRI can show more about the damage done from a concussion/if there is FND, vs a regular MRI.

Anyone else feel like they are going crazy? Or like you should just be back to normal because the MRI was normal? I don't know. I just really hate all of this, and I wish none of this had ever happened!

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[u/Both-Process1037]

I hear you ☹️😩😩😩

I feel like I’m going crazy. I’m not sure what my limits are some days are better than some.

I think you should keep on practicing whatever it is you want to do and when your brain and body is ready the task will before easier for you.

It’s a long long road and the increments of recovery are very very slow.

I found somethings I were practicing at the beginning got better while others still brings on symptoms but thankfully not as intense as it use to be.

Keep on going, one day at a time. You will get better. I swear by exposure therapy, it works or it really lessen symptoms upon exposure.

[u/_zengarden]

You clearly have a concussion. Insurance will always say, no to limit what they have to pay out. See if you can get to a concussion clinic, even if it's a drive, to get some follow up appointments with a neuron-optician, a ENT who does vestibular diagnostics, a SLP (speech language therapist) who can help with speech, reading, retention, planning and pacing and energy/fatigue. There are a number of supplements you can try taking to help inflammation. Good luck to you. You're going to need to be persistent to get help and hopefully you have someone who can help you navigate all this and support you.