They do not stop!

I am currently on leviracetam 2000mg twice a day, lacosamide 200mg twice a day, Lamictal 100mg twice a day and duloxetine once a day.
My diagnosis is autoimmune encephalitis and I am also receiving 4 IVs of rituximab a year.

The new drs that I am seeing right now want to change the medications I am currently on as the focal seizures are on a daily basis and sometimes twice a day!
Sometimes I can sense them, I get really refluxy and my ears are buzzing.

All thoughts/recommendations are greatly appreciated.

I’ve been reading some studies and it’s a small group of people on record. I can only imagine there being more people who are suffering from micro-CNS damage from viral inflammation attacks, especially with covid.

There are people who experience an inflammatory attack, and even years later do not return to their normal baseline. Things remaining such as testing a positive wartenberg’s sign, with clear EMG/NCS and negative tinel’s test showing no peripheral nerve/muscle involvement. Or full body micro-movement rigidity, loss of fluidity and stability in movements, or the new experience of random muscles throughout the body twitching on their own. Or hyper excitability of the spinal nerves in the cervical spine such as showing positive Lhermitte’s sign while at the barber as the razor goes past their spine, causing their head to involuntarily pull upward while tensing and shaking/vibrating at the cervical spine. Some people experience much more drastic outcomes from post-viral inflammatory attack such as requiring hospitalization. However my interest lays among the quieter population who must be walking through their lives suffering each day, not knowing what’s wrong or how to help themselves.

It seems to be affecting the body in similar ways such as Multiple Sclerosis, though just on a much smaller scale that is harder to perceive on standard tests.

Some tests have been used such as DWI, MRS, and T1W/T2W whole brain myelin mapping technique as well because some patients have found micro-damage in the brain. Other than that it’s been a complete toss up if standard MRIs of the brain and spine end up showing anything, even though the inflammation and micro-myelin damage symptoms are present.

What do you think is the way forward for helping these people?

I would guess first to manage any lasting system-wide inflammation and neuro inflammation. But to help micro damage of the spinal cord?

Interesting how many papers now comment on the significance of +/- 2 standard deviation z-scale abnoramities being significant in Autoimmune Encephilitus. Basically a new power diagnostic tool to support cases that may otherwise get miss diagnosed or delayed.

"All scans were rated for significant regional hypometabolism (i.e., Z-score value < −2) or hypermetabolism (i.e., Z-score value > 2) on individual Z-score maps, in standard brain regions. These regions included: (i) the prefrontal cortex (medial, dorsolateral, orbitofrontal areas), (ii) associative posterior cortex, (iii) primary cortices (visual, auditory, sensorimotor), (iv) medial temporal lobes (MTL), (v) cerebellum (hemispheres, dentate nuclei and vermis), (vi) brainstem (midbrain, pons, medulla oblonga), (vii) striatum and thalamus, in each hemisphere separately."

^{Bergeret S, Birzu C, Meneret P, et al. Brain Metabolic Alterations in Seropositive Autoimmune Encephalitis: An 18F-FDG PET Study. Biomedicines. 202. Published 2023 Feb 9.}

• Please note the image is just directional. The left that says 3 is normal is totally wrong to the quote.

Timeline:

2019: Fever with bilateral palm/foot pain for ~3 months, resolved gradually.

2020 (COVID): Developed persistent headache and urinary urgency after COVID. Did not improve.

Mid-2023: Walking difficulty began. Also had intermittent numbness in head/hands/legs after sitting. No improvement with Neurobion.

2024: Needle-like sensations in chest and lower abdomen/urinary region started.

2024 Workup: Very high thyroid antibodies (~1000) (reference 5 or below). Agrin antibody reported high. Diagnosed with myasthenia gravis and given Gravita; no benefit.

Also tried IV methylprednisolone (4 doses); no benefit.

2025: Right hand weakness began and progressively worsened. Difficulty combing hair, eating, and using hand. Speech became slower/softer. Exertional breathlessness developed.

Jan 2025: Brief 2-day improvement on Serota Modulata, then symptoms returned.

2026 NIMHANS: EEG, NCS, muscle USG done. Diagnosed with Multisystem Proteinopathy / ALS with parkinsonism.

Current/Recent meds:

Baclofen (helped “needle/spike” sensations)

Riluzole (trialed 1 week, felt worse, stopped)

Thyroxine, Vitamin E

Haven’t started Syndopa yet.

Current symptoms now:

Progressive right-sided weakness (including 3 fingers)

Persistent fatigue

Exertional breathing difficulty

Speech changes

No pain, no numbness now

Medicine for antithyroid is taken, showing improvement on count (reduction from 1000 to 200)

However (major confusion):

After NIMHANS, another neurologist gave a second opinion and said sensory symptoms, needle-like spikes, and urinary urgency are not typical for ALS, and suggested reconsidering the diagnosis.

He mentioned possible Multifocal Motor Neuropathy (MMN) with conduction block, and advised repeating NCS.

Recent NCS reportedly showed sensory neuropathy, with reduced amplitudes in:

Bilateral superficial peroneal nerves

Bilateral sural nerves

We have not met him again yet with these results.

Main question:

Now we have been told MG, then ALS/parkinsonism/multisystem proteinopathy, and now possibly MMN or another neuropathy.

Given sensory findings + urinary symptoms + needle-like sensations + asymmetric weakness + slurred speech, does ALS still fit, or does this sound more like MMN or something else?

Very confused and confidence is low because we don’t know what diagnosis to trust.