NPSLE experiences?

Hi everyone!

Hope you're all having a good day ❤️

Does anyone here have any insight into the kinds of neuropsych symptoms rheumatologists would find relevant? I have had lots of anxiety and depression problems since adolescence. There have been 3 suicide attempts.

I recall seeing a question re: suicide in the medical history section of the paperwork for the 1 rheumatologist I saw. I chose not to answer until I got to meet the dr. I was glad I didn't tell him bc he was a grade A douche and I'm sure he would have listened to me even less (if that's possible). But then I think, I should have shared bc it could be relevant. But what do I know?

Can NPSLE come on in adolescence and cause things such as anxiety, impulsivity, depression, and emotional dysregulation? SSRIs haven't really worked.

What I've read of NPSLE discusses mainly psychosis, seizures, and stroke. I've definitely had tingling/numb forearms/hand & lower leg/feet. Don't know if that is of an orthopedic origin.

But anyhoo, any thoughts would be appreciated 😊

5 Replies

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  • Are your meds coming from your GP or a psychiatrist. I don't know how long you've taken SSRI's but it could simply be that a combination of drugs are needed. I take two different antidepressants and have anxiety meds. Also, there are mood stabilizers that may help if you haven't tried. I personally think depression etc is not brought about as a symptom of lupus but as a result of dealing with it day in and day out.

  • I appreciate your response, catahoulamom!

    Short version:

    I've been on several different SSRIs along with several different mood stabilizers since 1998.

    In spring 2013, I weened off of all meds under the care of a physician. One drug (clonazepam) took me 3 months to ween off. I was convinced that having to take three psych meds a day was overboard. Few dr's want to teach you skills, they just want to throw pills at you. I was on the highest dose of Prozac (along with stabilizers) and still attempted suicide so I figured what's the difference.

    And I haven't been diagnosed with anything yet. I'm positive for some blood values (ana 1:1280, dsdna, ss-a, and high RF) and am only experiencing anthralgia in multiple joints. NPSLE comes up a lot in my reading, so I thought it'd be worth asking if my past troubles could be connected.

  • Please forgive the over-share. I figured since this was anonymous, I'd have nothing to lose mentioning my psych troubles. I don't know if those types of symptoms are important in "whatever auto-immune thing I have," so I apologize if I'm way off track here. But I thought I'd just ask what the personal experiences of NPSLE are bc I worry- what if there are symptoms I've become accustomed to? All I have to learn from is the internet 🙄and my first and only 15-20 minute appointment with a very uninformative rheumatologist. Autoimmune info is so vast and vague to someone like me. I'm having a hard time just forgetting about it and living my normal life while I wait to see another rheumatologist, not bc I'm suffering but bc I'm worried. How can I not wonder and try to research? Ugh. I'm exhausted... And still not a Dr. after all my Googling 😅

    Wishing you all well 💕

  • If you r worried and you have a while to wait to c rhuemy pls don't struggle on.your depression and anxiety will build and build untill you completely breakdown.if you need more info or just an ear to listen pls go to your gp he might b able to settle your mind.write down all the questions/queries and take them with you and preferrably take some one with you.from experience you never take in all the doc says because your mind is going million miles an hour or take own n paper and not down important stuff.don't suffer in silence the community here Will listen if you need a rant but none of us are medical professionals and mental health can't b messed with.I 've suffered depression and anxiety since I was 13 I'm now 37 and still suffering.

  • I appreciate that Mandagee, but I've been seeing a psychs weekly since I was 18. I'm 37 now too :) My gp is clueless about anything other than the flu. I'm more interested in experiences with rheumatologists having acknowledged their psych sympyoms are Lupus-related, or if they have knowledge/research on NPSLE, other than the results you'd get from and google search of journal articles, as I've already "purpled out" any authoritative sources.

    But you're right GPs should be a go-to for basic depression and anxiety.

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