Rheumatologist Questions Lupus

“Possible Neuropsychiatric systemic lupus erythematosus (NPSLE) (dx'd with UCTD, atm)”

I have fluid on my brain of unknown origin, but they're referring to it as hydrocephalus which my new Neurologist at my last 2 visits told me at the first one that she couldn't call it hydrocephalus because my gait and short term memory seemed normal. At the next appointment, I told her about the vertigo I'd been having. I also noticed the dent in the top of my head has gotten bigger and wider. I'm quite concerned, feeling like my skull is splitting. I've also had over the years some psychotic symptoms. This is my question: Could I be developing NPSLE? My c3 and c4 have been coming back low, ds/DNA keeps elevating, but on the borderline between pos and neg, keeps rising. Anti Smith- pos, super high UIRNP. Other symptoms also.

Female | 59 years old
Complaint duration: Four to five years.
Medications: Plaquenil, topiramate, alprazolam, morphine er, oxycodone, levothyroxine, Ventolin inhaler, vitamin d, magnesium oxide.
Conditions: UCTD, Discoid Lupus, asthma, fluid on my brain of unknown origin- possibly from 3 TBI'S, but they were all 10 years apart, the last one was over 10 years before I developed the hydrocephalus, fluid. Osteoarthritis, DDD, DID, Aspergers, PTSD, Panic Disorder and much more.

4 Answers

Tough problem, consider a consult with a neurologist, the next tests are tough
Yours is a very complex situation. I have no doubt you have a UCTD on the SLE axis. SLE has a rare complication of hydrocephalus. SLE hydrocephalus can be normal pressure or increased pressure. I suspect your pressure is low as it is being decompressed by whatever this grove is at the top of your head. Is it a widened suture or an old fracture? I presume the AspPanic Disorder & Aspergers, PTSD, Panic Disorder etc, all preceded the SLE and are not the result.

Your neurologist may need a Neuropsychiatrist to help control the latter problems. Am not sure what your blood tests for inflammation reveal but suspect Plaquenil is not strong enough and that you will need much stronger drugs to control this. Your situation strikes me as complex but can be controlled.
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I can't say the fluid build up is connected to SLE. Your neurologist would decide if there's a need to perform a spinal tap. If spinal fluid is normal that would be reassuring.
Enlarged ventricles may be secondary to different etiologies. We will have to look at the images to make a better judgment. we have to examine you in details and get a proper history to further evaluate and decide the best course of action.

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