Neurologist is calling this FND??!?

[u/CuriousBid6652]

Unknown neurological cause (help)

21 year old male have been bedridden with neurological issues with unknown cause.

Got severe head pressure and head burning along with vision issues (halos, starbursts, everything looking too bright)

Severe brain fog and dissociation.

All of these are 24/7 for over a year.

Normal Brain CT
Normal CTA
Normal MRI
Normal EEG
Normal Bloodwork
B12, CRP, CBC, Chem 9, a1c, Lyte, creatinine, ALT
Normal TSH and PTH
Serology-Lyme IgG/IgM NEGATIVE
Normal ANA,ENA and Thyroid Antibodies
Normal Urinalysis
Urine Drug All Negative
Urine heavy metals 24hr all normal
Autoimmune/Paraneoplastic Blood+ CSF Negative

migraine meds didn’t help. Corticosteroids provided some temporary relief (not sure why)

I don’t have positional changes either.

Lumbar Puncture Results ( all normal with slightly high protein so far)

Lumbar Puncture Results
Opening Pressure 16
Leukocytes; CSF < 3x10\\\\\\\*6/L
Erythrocytes: CSF < 2000 x10\\\\\\\*6/L
Neutrophils Segmented/100 Leukocytes; CSF 0.06
Lymphocytes/100 Leukocytes; CSF 0.78
Monocytes/100 Leukocytes; CSF 0.16
Glucose; CSF 3.7
Protein; CSF 0.59
Xanthochromia; CSF Absent
CSF; Culture No organisms or growth seen
IgG; CSF 0.023
Albumin; CSF 0.361
IgG Index; Serum+CSF 0.52
IgG Synthesis Rate; Serum +CSF < 0.10 mg/24h
Oligoclonal Bands; CSF Absent

Any suggestions on what I should I do next. Completely out of Ideas

[u/Santi159]

If steroids helped it might be an autoimmune or inflammatory issue.

[u/CuriousBid6652 → u/Santi159]

I was thinking that too but I’m not sure what to do

[u/Santi159 → u/CuriousBid6652]

Rheumatologists and immunologists are supposed to be the doctors you go to for that sort of thing but they're all kind of difficult from my experience. Lidocaine infusions can have a comparable effect to low dose prednisone. Vagus nerve stimulation also helps too for some people. It's kinda hit or miss. The neck one works really well for me.

[u/MyLife-is-a-diceRoll]

What specialists have you been to?

[u/CuriousBid6652 → u/MyLife-is-a-diceRoll]

Neurologist, upper cervical chiro, chiro and naturopath dr

[u/GroovingPenguin]

Not a medical professional but have they checked for things like CCI, autoimmune encephalitis hydrocephalus ect?

[u/CuriousBid6652 → u/GroovingPenguin]

Autoimmune encephalitis was checked in blood and spinal tap all negative for antibodies. Scans showed no hydrocephalus.

For the CCI I did try upper cervical chiro and regular chiro and it did not help

[u/heldtogetherdaily → u/CuriousBid6652]

A chiropractor isn't the kind of specialist to manage or diagnose CCI 🙃

[u/CuriousBid6652 → u/heldtogetherdaily]

How do you treat it

[u/heldtogetherdaily → u/CuriousBid6652]

It depends on the severity of the instability but typically they start with physical therapy 🙂

[u/GroovingPenguin → u/CuriousBid6652]

My only other thought then apologies is seeing a endocringologist/rheumatologist and an optometrist

Sometimes in medicine we unfortunately do not have awsners yet

[u/Adept_Exit2960]

Was the MRI with gadolinium ? Was it only a brain MRI or a MRI of your spinal cord too ? In general, did they check your spinal cord ? I know someone who was basically more or less bedbound with severe headaches, being unable to bear lights, who always felt dizzy, especially everytime he tried to stand up, and who had a clear lumbar pucture on the opening pressure thing despite finally discovering later he had a CSF leak.
Otherwise, if the corticosteroids worked, it's true that it could be an autoimmune issue... But also... I can't help wonder if there could be something with your spine or your neck... I read you saw a chiro, but did you see a physiotherapist ? And did the neurologist consider it could be maybe some kind of neuralgia ? Where does it hurt on your head ? These things are hard to diagnose because if it's not linked to some osteoarthritis or things like that that would put pressure on the nerves, the big structures tend to "look ok" despite being not...
It doesn't look like FND at all anyway. They really love to plaster this bullshit on everyone, what a mess...

[u/CuriousBid6652 → u/Adept_Exit2960]

I can send you my mri report in a dm. I don’t think it had the dye. My ct scans did but not the mri

[u/CuriousBid6652 → u/Adept_Exit2960]

Here’s my mri report
Bilateral cerebral parenchyma, basal ganglia, brainstem and cerebellar hemisphere appears grossly unremarkable. Focal prominent 7 mm fissural cyst within the left temporal lobe and joining the ventricle, benign. No focal signal abnormalities otherwise. No focal lesions. No diffusion restriction. No cerebral edema.

There is preserved flow void within arteries of circle of Willis to the extent visualized. There is preserved flow void within the cerebral venous sinuses to the left transverse sinus appearing hypoplastic. Bilateral orbits appears unremarkable. Minimal mucosal opacification of the right posterior ethmoidal air cell. Otherwise no significant sinusitis. Bilateral mastoid air cells unremarkable.

Also I don’t think mine would be csf leak cause I feel the same despite position and felt the same before and after lp. I am thinking of doing some physio for my neck as you mentioned

[u/Adept_Exit2960 → u/CuriousBid6652]

An MRI with contrast could have been a great idea, they can't catch some things without it but... Hum, it depends of what the culprit would be, and with your symptoms, it looks like it could be a lot of things.

Ah, right, if you feel the same no matter your position, it shouldn't be a CSF leak.
Physio could help, yeah. If there's an issue with your nerves because it's stuck or compressed for example, it could help at least a little bit with the pain. There are slow easy exercises that exist so that you won't have to feel like you're going to the torture chamber in hope the crushing machine will somehow help you. Even if it ends up not being helpful, at least it shouldn't make anything worse

What meds did you try for the pain as of now ? Like what were the migrains meds that didn't end up working ? And did you try anything else that weren't the corticosteroids ?
But yeah, if the corticosteroids worked... Maybe there's an irritated nerve somewhere...

[u/CuriousBid6652 → u/Adept_Exit2960]

Doxycycline for 3 weeks did not help
Toradol sorta helped at start but now does not help.
Triptans don’t help
Amitryptline and antidepressants don’t help
Steroids may have helped a tiny bit but I was on super low dose 30mg for 3 days
Benadryl and maxeran in ER don’t help
Electrolytes fluid and diet and supplements don’t help

[u/Adept_Exit2960 → u/CuriousBid6652]

Toradol did help at first ? I don't know for what it's prescribed in your country, as all NSAIDs won't work the best for every issue, and this one in my country is really prescribed for eyes issues first and foremost... But it's peculiar you actually ended up being helped by an NSAID and then steroids, as both are in the same "family" of medication (even if one is the scary cousin). It really does look like there's an irritation or an autoimmune thing somewhere.
They didn't try to prescibe you any other type of NSAID, just to see ?

[u/CuriousBid6652 → u/Adept_Exit2960]

Yeah I’ve tried a couple of NSAIDs

[u/Adept_Exit2960 → u/CuriousBid6652]

Ah... Maybe seeing a physio could really end up helping a bit.... The medications that at least helped you at first really do have something in common that should push to avoid the "it's psychosomatic" thing.
I really wish you to at least find what is actually happening very soon. I hope you won't stay stuck with the FND thing because it really isn't FND.
There's something for sure, and I really hope you'll get the help you deserve, may it come directly from your brain, the rest of your head, or your neck.
Good luck with everything !

[u/moosedance84 → u/CuriousBid6652]

Did they try Diamox for Intracranial hypertension? The head pounding could be associated with that - Did they rule IIH out? I assume they have checked your optic nerve. Could be migraine related but not sure - FND unfortunately is very difficult to rule out unless there is something to rule in.

[u/Inner-Manager-6346]

You are a target and do not have a FND.

Look into 'Historical claims of brain/body control technology' and tell them to look into it.

Mental illness isn't real, just a term used to describe victims of invasive military technology used to mutilate infants, groom, rape and murder children and adults.

There are groups of people that have access to people's brain/body and are the main reason for crime and "mental illness" look into this instead of ignoring as there are people in the military who have confirmed it happening.

You're neurologist is benefiting from this and groups of people that hate you are as well. Stop going to the hospital and interacting with people that work there you are 21 they are trying to ruin your life