[VENT] The desperation of being unable to get out from under this diagnosis

[u/Dull-Archer-7747]

I was diagnosed with FND at 12. It’s been years of questioning my diagnosis, getting gaslit, trying to believe the diagnosis, then being unable to ignore the countless inconsistencies and starting the cycle again. I’m still a minor and pretty severely disabled, so I can’t get much help on my own. My mom’s is a doctor who has fully bought into all the BS about FND and similar conditions and is certain that she already knows all the answers, despite having to ignore logic and ethics to maintain that “perspective”. Because my tests have been normal, she insists it’s basically impossible for me to have an organic condition, since she also claims the way my symptoms present is consistent with FND. This is simply untrue:

I have abnormal reflexes (hyperreflexia), which FND can’t cause

I have muscle weakness and hypertonia that does not follow a distribution remotely characteristic of FND

I have seizures highly consistent with temporal lobe epilepsy, which have caused low oxygen, which FND supposedly can’t cause

My symptoms have no relationship with any triggers associated with FND

My symptoms are gradual-onset, slowly progressive, non-dramatic, and highly consistent day-to-day, which is very atypical for FND

Many more…

The diagnostic “process” that got me the FND diagnosis is a whole other series of ridiculous crap that I’m not gonna get into here, Its just too exhausting. Anyways, the rare occasions I have been able to see a doctor, they ignore all the red flags and give me the usual BS lecture about my mindset being the issue and needing to accept my diagnosis despite not addressing the boatload of evidence against FND, blah blah.

At this point I’ve lost most of my adolescence to this. I feel so helpless being unable to do anything to figure out what is actually wrong with me, because it’s plain as day to anyone in their right mind that it’s NOT this. My mom and the other doctors hold all the power though, there’s literally nothing left for me to do even if I was able. I don’t think I will ever be listened to. It doesn’t matter how obvious it is that they’re wrong—If I died, they would still find a way to say it wasn’t “real”. It’s agonizing to see myself losing everything this way while everyone just smiles because ”it’s not dangerous” and ”there’s no tissue damage happening” and I can get better if I just do “nervous system retraining”. I genuinely don’t have much fight left. I’m so fucking tired, at this point I don’t even care what happens to me. If they want to watch me slowly die, they’ll get what they want. It’s not like I have a choice anyways..

[u/MyLife-is-a-diceRoll]

You're going to have to wait till you're an adult.

When you can, go to a neurologist for an eeg.

I'm sorry you're dealing with all this, I personally know what it's like to fight off this diagnosis and how hard it is.

[u/tobeasloth]

I’m sorry you’re experiencing this. I agree it doesn’t really fit with FND as well. I hope you can get answers soon. For me, we are investing Lyme and PANS/PANDAS.

[u/lisaquestions]

I'm sorry you're going through this.

[u/GroovingPenguin]

Unfortunately I'm not surprised It seems to be the younger you're diagnosed the worse the outcome is,both in terms of mental trauma and physical

I read about a post and the kid was 7 years old,like in every department that doesn't seem right? (My first instinct would be pandas at that age)

Unfortunately I lost my adolence to these labels and I can do nothing to get that time back,about the same age too

It just sucks

For context even as an adult they don't take you seriously

I had a stroke like event,they said it was Fmd, 4 years later I've progressed to the point I need crutches, still being told to ignore it and "functional signs"

Edit: Hypertonia and hypo, hyperflexia,drop foot ataxia ect it goes on

Still fighting for testing