newfound former-EMT friend is very refreshing to talk to about health. comrade is a democratic confederalist (does not mean confederate, Google terms before making assumptions) and very values aligned but also has the knowledge of all of what I'm saying so I can actually talk about the nitty gritty details and have comrade follow along. we were chatting about my cognitive impairment and comrade starts talking about neuroplasticity and how brains are always growing and how this is not a hole I am stuck in. comrade talks about the fact that I might never reach the same point I otherwise would have if I never experienced cerebritis but I can still learn and grow. brains are never done developing.
[ID: A reaction image of a person laying down in a puddle of tears that is also filled with hearts]
comrade loves mad liberation too. I trust this person so fucking much. new AG let's fucking go!!!!
Hi. I’m not new to being sick, but I’m very new to being taken seriously. That only happened because my body is currently collapsing fast enough that doctors couldn’t look away anymore.
I live with overlapping autoimmune diseases, but recently I got upgraded to the “CNS involvement” tier. Think brain inflammation, spinal pressure, hallucinations, cognitive fog, and one healing spinal fracture I didn’t even realize I had. I thought it was just my usual back pain. Turns out it was… a broken bone.
I’ve been hospitalized twice in the last month. A spinal tap showed my brain pressure was way too high, 32 cmH₂O, where normal is typically between 10 and 20. My spinal fluid was full of immune cells , 40% of them, when 0–5% is normal. My MRI has white matter lesions. It’s not MS. It likely neuropsychiatric lupus. It might be a weird intersection of multiple things. No one’s totally sure yet.
What I do know is I’m on IVIG now, possibly headed for a brain shunt, and trying to stay out of the hospital. Also, I’m trans and had to pause testosterone because of clot risks from treatment. No, there’s no workaround. Yes, it sucks.
This blog is my space to document what it’s like to be visibly declining after years of being invisibly sick. No pity required. Just here to tell the truth about what it’s like to have the Premium Autoimmune Package, full access unlocked.
Nervous System Effects of Systemic Lupus Erythematosus
AKA I spent hours suffering trying to find all this information and I want you to not have to do that!
Cerebrovascular
1. Stroke
"...studies have shown that stroke occurs more frequently in people with SLE than in the general population, with ischemic stroke developing in up to 20% of lupus patients..." link
2. Cerebral Small Vessel Disease
"CSVD is an umbrella term for a variety of conditions resulting from damage to small blood vessels in the brain. In most cases, CSVD is caused by the narrowing or obstruction of small blood vessels in the brain due to inflammation and/or a buildup of misfolded proteins called plaques. This chronic damage can starve brain cells of oxygen and cause internal bleeding, which in turn can damage other nearby brain cells." link
Diagnosed via a brain MRI to look for bleeding of the small blood vessels, damage to white matter, and small strokes - link
Occasionally is confused for Multiple Sclerosis - link
"Quantified MRI brain studies of individuals with lupus show significantly accelerated cerebral SVD, suggesting that this is the most frequently observed radiological–pathological brain abnormality in lupus...." link
CSVD is a large cause of dementia in the general population but the significance of these findings in SLE patients is unknown - link
Central Nervous System
1. Transverse Myelitis
"Transverse myelitis is a neurological condition that happens when both sides of the same section of the spinal cord become inflamed. This inflammation can damage myelin, the fatty substance that covers your nerves. Loss of myelin often leads to spinal cord scarring that blocks nerve impulses and results in physical problems." link
Symptoms can develop quickly or over the span of several weeks. Symptoms include back pain, neck pain, paresthesia, loss of bowel and/or bladder control, and heightened sensitivity to touch - link
Diagnosed via CT, MRI, or myelography - link
Differential diagnosis of comorbid Neuromyelitis Optica Spectrum Disorder - link
Transverse myelitis occurs in approximately 1% of lupus patients - link
2. Autoimmune Aseptic Meningitis
"...an inflammatory condition affecting the meninges, the protective membranes surrounding the brain and spinal cord..." - link
"Given that many individuals with lupus are immunosuppressed, a critical differential diagnosis is one of infectious meningitis caused by typical or opportunistic pathogens." - link
May cause nausea, fever, and neck stiffness among other symptoms - link
Diagnosed with a lumbar puncture and/or CT in part to rule out other causes of symptoms - link
3. Chorea
Chorea is a movement disorder causing involuntary, irregular, and unpredictable muscle movements. It affects arms, legs, and facial muscles - link
4. Parkinsonism
Causes slowed movements, tremor, and stiffness - link
Not the same as Parkinson's Disease!
A rare effect of lupus - link
Diagnosed based on brain MRI, single-photon emission computed tomography (SPECT), and response to treatment - link
5. Myoclonus
"Myoclonus is an uncontrollable muscle movement that’s sudden and brief. " link
6. Demyelinating Syndrome
"An association between lupus and MS-like brain changes have been suggested, and sometimes termed “lupoid sclerosis”" link
3.7% of patients have a demyelinating syndrome (though not all have primary SLE demyelination) - link
Demyelinating syndrome may cause vision loss, muscle weakness, muscle stiffness and spasms, loss of coordination, change in sensation, walking problems, and changes in bladder and bowel function - link
7. Lupus headache
"Headache is a highly prevalent disorder in people with SLE, but there is no convincing evidence that this incidence is higher than that seen in the general population. Thus the entity of “lupus headache” is controversial." link
One of the main characteristics of lupus headaches is that they are not remedied by pain medication. lupus headaches require treatment with steroids or immunosuppressants to resolve -- "severe, persistent headache; may be migrainous, but must be nonresponsive to narcotic analgesia" link
"Posterior reversible encephalopathy syndrome (PRES) is a neurologic disorder in which a person presents with visual disturbance, seizure, headaches, and altered mentation" - source
"Posterior reversible encephalopathy syndrome (PRES) has been increasingly identified in patients with systemic lupus erythematosus (SLE)" - source
8. Seizures
"prevalence of explicit episodes of seizures among SLE patients, varies from 2 to 8%." - link
"SLE patients with recurrent seizures usually have abnormal findings on EEG, consistent with focal aware events, epilepsy with impaired awareness and focal to bilateral tonic-clonic epilepsy, as demonstrated by Appenzeller and colleagues who found that 9.7 % of patients with single epileptic seizure had abnormal EEG findings, compared to 100 % abnormal EEG findings, commonly on temporal lobe, in patients with recurrent seizures" - link
Peripheral Nervous System
1. Cranial Nerve Disorder
"Cranial nerve disorder refers to an impairment of one of the twelve cranial nerves that emerge from the underside of the brain, pass through openings in the skull, and lead to parts of the head, neck, and trunk. These disorders can cause pain, tingling, numbness, weakness, or paralysis of the face including the eyes." - source
"Cranial nerve involvement is also relatively uncommon and usually transient, occurring in 10% of patients with SLE." - source
2. Peripheral Neuropathy
"Peripheral neuropathy happens when the nerves that are located outside of the brain and spinal cord (peripheral nerves) are damaged. This condition often causes weakness, numbness and pain, usually in the hands and feet. It also can affect other areas and body functions including digestion and urination." - source
"Peripheral neuropathy occurs in as many as 18% of patients with SLE" - source
Ocular
1. Optic Neuritis
"The optic nerve itself can sometimes be inflamed in lupus, or it can be affected when the blood vessels supplying the nerve are themselves inflamed (that is, ischemic optic neuropathy). This can lead to a change in vision, or even vision loss." - source
"Optic neuritis is an uncommon neurologic manifestation of systemic lupus erythematosus (SLE) and can be seen in about 1% of lupus patients" - source
"Optic neuritis usually affects one eye. Symptoms might include: Pain, vision loss in one eye, visual field loss, loss of color vision, and flashing lights." - source
Autonomic Nervous System
1. Autonomic Neuropathy
"Autonomic neuropathy occurs when there is damage to the nerves that control automatic body functions. It can affect blood pressure, temperature control, digestion, bladder function and even sexual function." - source
"Autonomic nervous system dysfunction is highly prevalent in SLE patients (up to 54%)" - source
Psychiatric
1. Lupus psychosis
" Psychosis is a serious mental disorder featuring defective thought processes, frequently with delusions or hallucinations." - link
Psychosis is one of the diagnostic criteria for systemic lupus erythematosus
"Differentiation of steroid-induced psychosis from lupus-associated psychosis is particularly challenging" - link
Bloodwork came back positive for GAD65 antibodies. So now my rheumatologist is assuming not just neuropsychiatric lupus, but also Stiff Person Syndrome and GAD65 autoimmune encephalitis, based on my imaging and other test results.
I guess we’re just collecting neuroimmune disorders like trading cards now. Got brain fog? Muscle spasms? Random hallucinations? Congratulations, you might qualify for the rare holographic edition.
At this point, it feels less like getting answers and more like unlocking increasingly cursed DLC. The collector’s set is not supposed to be this complete.
So, remember how I said I got the premium autoimmune package? Turns out that includes an extended trial of Hospital™. Two visits in 30 days. No points earned, no free sandwich. Just new diagnoses, more needles than I can count, and a very weird moment where a nurse said, “You’re too young for this,” as if my immune system just missed the memo.
Here’s what we’ve unlocked on this adventure:
Neuropsychiatric lupus (NPSLE). Yep, my brain is inflamed. There are lesions, optic nerve swelling, and elevated spinal pressure just for fun. My CSF basically came back with a sticky note that said, “System under attack.”
Ground-glass lesions in my lungs. Which I’m told are not a fog machine in my chest but actually another marker of inflammation.
I also found out my spine is a bit dramatic. Turns out I have a healing fracture in my S1 vertebra that no one expected. I just thought that pain was part of my normal joint chaos. Apparently not.
I’m already on maximum-dose CellCept, doing Simponi Aria infusions, and plot twist, it’s still not enough. I can’t take steroids (they turn me into a medical emergency), so we’re moving to IVIG and Rituximab. A port is being discussed, and neurosurgery wants to chat about a brain shunt like it’s a normal Tuesday.
Right now, I’m in that in-between place. Grateful to have answers, overwhelmed by what they mean, and just trying to exist without my body throwing another plot twist. It’s like playing Autoimmune Jumanji, and I just rolled for “spinal tap.”
So if you’re still here, thanks. Thanks for caring, for checking in, and for not saying “but you don’t look sick.” If you’re on this ride too, I see you. And if you’ve got Rituximab experience, port tips, or just memes to throw at this mess, my inbox is open.
I’ve tried to sort out my health this year so that I’m more prepared to start work next year. That was a good plan, in theory. I feel like it’s resulted in multiple small scale existential crises though. Because each specialist I’ve seen (bar gynae) has given me a new diagnosis. Medical trauma has been.. a wild ride.
I’ve absolutely felt cheated by other doctors every time a new diagnosis has been made. I’ve been left asking myself:
‘why do they think they have the right to blame my psych diagnoses for that?’
‘Why were they gaslighting me?’
‘Why didn’t they take me seriously?’
‘Why didn’t they trust me to know my own body?’
It was a great idea to try and get everything sorted before I start work next year. Except now I’m left with more trauma to deal with and far less trust in my medical professionals, which I’d worked hard to build in the first place. So the C-PTSD recovery is worse off in some ways, but my medical care should hopefully only improve from here? I hope it’s worth it. It doesn’t feel like it right now.
Neuropsychiatric Lupus (Signs/Symptoms & Medicines) ". . . Neuropsychiatric manifestations of SLE (NPSLE) consists of two broad categories: central and peripheral nervous system syndromes, which cover a wide range of clinical presentations such as stroke, seizures, and psychosis." "In patients with life- or organ-threatening manifestations of SLE, the combined use of high-dose corticosteroid and immunosuppressants, such as cyclophosphamide pulse and mycophenolate mofetil, is necessary. If patients do not respond to conventional treatment, biological agents, including anti-BAFF, anti-CD20, anti-CD22, and CTLA4-Ig, are additional available therapies." "A more effective and less toxic approach to SLE treatment remains to be found." (Tanaka)
