Reeling... not sure where to start

I came home from work earlier because of brain fog. I mean, I knew I was having trouble finding words, or knowing that the words I was using were the right ones, but when I caught myself wandering around Outlook trying to work out/remember how it all worked (this is something I'd normally do without any thought at all), I knew that I shoudn't be there.

I've been diagnosed with SLE. Or, at least, my record shows a diganosis... I have yet to confirm or discuss this with my rheumatologist after discovering this in my online record, and in my medical history listed on my MRI scan I had done yesterday (normal results, btw, per the imaging agency). The last discussion I had with my rheumatologist, Lups was on the table, but not certain, and we were treatng my auto-immune flare the same regardless of what label applied.

Now apparently I've been "upgraded" from undifferentiated connective tissue disorder - the diagnosis I've had now for several years, despite my atypical symptoms and presentation (or such was my understanding) Maybe its' the cognitive issues I've been having lately that finally did it (the same that were cause for the brain scan). Sometimes I'm fine. But I've had periods in the last week (?) or two during which I felt completely disoriented every time I turned around. I couldn't remember what I had in my hand 10 seconds ago, or IF I had anything in my hand 10 seconds ago. I was losing everything constantly, regardless of whether I actually had it with me or not. I couldn't remember what day it was. I've been having trouble remembering words (you know, pesky difficult words like, say, "cat" or "umbrella" - sheesh) , or recognizing that the words I'm using are correct or logical. Sometimes it's as if the words leaving my mouth (or someone else's) hit the air and form some sort of oddly fascinating crystals that sort of float there. They're neat and fascinating, maybe, but they don't make much sense as language. I'm not familiar enough yet with Lupus to know whether or not that is a typical thing, or how to know if/when it's attributable to auto-immune involvement.

I'm hoping to find some greater understanding and clarification here, and perhaps start to figure out whether a Lupus diagnosis actually makes sense. I've always had "atypical" presentations of all kinds of things, though my impression is that with Lupus the "atypical" might be more typical than classic presentation.

I have tons of questions, and hope to wander around here to find some answers. I tried joining the chat a few times but either I'm missing some critical piece of using chat (no one home, no one responding even when someone was shown online, and my own words weren't showing up when I typed them until I closed and re-opened the window or some such), or it wasn't working for me. If someone could clue me in, I'd appreciate it.

Anyhow... my profile, in case anyone's interested, is as follows:

middle age woman, bloodwork largely normal except for an ANA 1:80 speckled, chronically elevated CPK (CK) - usually somewhere around 600 where below 150 is norm - and mildly positive anti-dsDNA (third positive out of five tests over many years). This time 19 where ref range is normal below 5 (I think? something close to that if not that).

Have had Raynaud's since college, as well as auto-immune urticaria - chronic and severe for periods of time, though never diagnosed as auto-immune related until this past year. Auto-immune-related scalp issues (probably dating back to childhood, though again, not diagnosed as such until recently).

Not sure what all actually makes sense in an "auto-immune" framework. My rheum. says my back pain is not related, but it certainly seems to be a part of this recent flare along with exacerbation of overall pain, exhaustion, confusion, inflammation (including edema and spedific injury-related).

I've had mood symptoms, and also was diagnosed with ADHD in the past year after detailed testing... though I have to wonder if Lupus can cause something that looks like ADHD, as no ADHD meds have helped and ADHD symptoms seem to be something new in the last 5 or so years - not dating to childhood that I can recall at all.

How's this for an epic intro essay? Sorry. I guess I don't even know how to summarize. I feel like a mess, and am exhausted and demoralized and just trying to figure out which way is up.

Any comments, thoughts welcome.



Hi Indigo,

I understand how you feel. It is horrible to know there is something wrong but not have a clear understanding of what that is. I am hoping I can help shed some light for you. I was having similar issues as you, I would get disoriented, confused, lose words, eyesight issues, chronic migraine, and chronic vertigo to name a few. Slowly these symptoms became very severe. I couldn't speak at all at times and when I did speak it was what the docs called scanning speech. I also developed uncontrolled movements, difficulty walking ect. My blood tests were okay except always a positive ana which would vary. My mri's were pretty much normal. Finally when I had an eeg and lumbar puncture these were not normal. The EEG's showed slowing on one side and the lumbar puncture showed swelling on my brain which my neurologist said is due to an autoimmune disease (they ruled out cancer, which would be the only other cause). I have Lupus attacking the nervous system and brain. The symptoms started out slowly were I hardly noticed and they kept progressing. But they would also come and go, so I would think it wasn't really happening in the beginning. My neurologist called what I was experiencing autoimmune encepolapathy(not sure of the spelling). I hope this helps you to understand what you are going through a little better. If you have any questions for me please ask, I want to help.