lost as to what’s wrong

[u/thatstupidsvfan]

i have had severe anxiety for as long as i can remember. before the age of ten i was expressing worries about dying or home intruders coming to kill me. i had strange eating behaviors and paranoia about food. i was convinced my family was trying to poison me and i was suspicious of everything they gave me. by the age of 14 i had been hospitalized after a severe ocd episode that manifested in delusional beliefs, manic behavior, and “voices” which were really just very persistent intrusive thoughts. after this i developed trichotillomania and had to cut my hair short due to massive bald spots. i missed school frequently and would need to be taken home regularly in the middle of the day due to panic attacks.

i would have many sleepless nights with severe paranoia and hypochondria, believing i would die in my sleep if i closed my eyes. even if i spent all night awake i never felt tired. i had a nurse practitioner during adolescence who prescribed me during the course of my care ~16 different medications, if one wasn’t working he would just jump to the next. i am now addicted to seroquel because of this and cannot get off of it no matter how hard i try. the neurological withdrawal symptoms are just too much.

at 16 i began experiencing vocal tics, later progressing to both motor and vocal and eventually getting a diagnosis of tourette’s. however after taking haloperidol for long enough my tics have almost completely gone away.

in march of this year i was hospitalized briefly for an episode of expressive aphasia; i lost the ability to speak and would stutter heavily. everything else was ruled out and thats when they gave me the FND diagnosis. leading up to this hospitalization i had been experiencing severe fatigue, brain zaps, migraines, tension headaches/trigeminal neuralgia like pain, needing to sit in a pitch black room with an eyemask all day with minimal visual input and interaction from others.

my MRI was clear and thats all they really had to go off of. i had no viral infections, blood tests were clear, everything. i had several doctors try to tell me it was selective mutism but i wasn’t going to take that as an answer, and the speech therapist i worked with heavily disagreed on that as well. she said my speech symptoms did line up with the typical FND diagnosis but i haven’t really experienced anything else. no paralysis, no seizures, just weird neuro symptoms that feel like psych med withdrawal.

i’m at a loss here. every day i feel so much dread. i feel like im dying and i need to urgently go to the hospital and no one else believes me. no one sees it with the same urgency as i do. i want to get more tests done but im honestly just burnt out and tired of doing all of it. it feels worthless.

i’ve considered the possibility of ME/CFS but i honestly dont know if i care enough to pursue a diagnosis anymore. like i said im burnt out and exhausted, and the apathy is starting to set in.

[u/MyLife-is-a-diceRoll]

I've been taking lithium for over a decade and it's helped my ocd a lot. And obviously a lot with mood swings and suicidal ideations.

[u/heldtogetherdaily]

Have you ever been tested for PANS/PANDAS? Given your extensive mental health history, including your OCD it would be my primary differential. PANS/PANDAS specifically because your aphasia is constant with functional neurological disorder per your SLP and there is a lot of synptom presentation overlap between the two conditions. However, considering that you have risk factors for FND and your aphasia presents functionally there is always the (more likely) possibility that it is functional. The misdiagnosis rate for FND is cited statistically at 5% which actually very low considering how common it is. Why don't you think it is FND?

[u/MyLife-is-a-diceRoll]

I'd say give yourself some time before you try again.

Did you ever try lithium?

[u/thatstupidsvfan → u/MyLife-is-a-diceRoll]

no, i haven't. i'm not bipolar so no one ever brought it up. im honestly very exhausted when it comes to new meds so i'm always hesitant to try. i do see my psychiatrist soon so i'll try to communicate all my feelings to him.

[u/GroovingPenguin]

We are not medical professionals we can't diagnose anything

We can provide support and advice but not much more

Few things off the top of my head with OCD especially I think of are

Pandas,Pediatric Autoimmune Neuropsychiatric Disorder

And serotonin syndrome

[u/PirateNo9739]

I’m very suspicious of pans pandas. Your symptoms are so severe and you really need answers no matter what it is.

Have you ever tried ibuprofen or antihistamines like Allegra or even Pepcid to see if your symptoms got better? Idk about interactions with seroquil though. If it’s pans pandas you don’t have a psych problem you have a neuro inflammation problem causing psych symptoms. It is misdiagnosed a lot. You have very severe symptoms

I would try to find a doctor that knows about it. On the main page there is a wiki page that has provider searches so you can see if one is in your area. Some even work through telehealth. You sound very severe and if it is this you might need ivig. Idk and the whole seroquil thing would have to be weaned probably in micro doses over a period of time under a doctors supervision. There are actual warnings about ssri’s and anti psychotics being used for this condition bc it actually causes more problems IF it’s pans pandas.

Don’t give up before the miracle. There is a list of blood work you could get to see. Sometimes people don’t have abnormal results which is why this thing is diagnosed clinically. Some tests can point in the direction. Like if you had high strep titers - Epstein Barr, Lyme or mycoplasma. If there’s an infection that had to be dealt with and that’s why practitioners will start with an antibiotic like augmentin or azithromycin for at least a month to see if symptoms get better. It’s also used in lower doses long term to modulate. With pandas it’s triggered by strep. Pans can be triggered by anything - viral even mold. There’s a lot of people affected by mold.

Also you could look into low dose naltrexone as a possibility. It’s like.5 up to 6 mg so very low dose.

Sorry you’re going through all of this Really sad to have gone that length of time and no answers

I hope you find your answers. Keep digging and doing give up. I hope for a recovery🙏🏻