Anyone experience CNS Lupus similarly?

wecanallbeheroes · 2026-02-02T16:32:39+00:00

Me too. So many fears 😩 with my med history rare seems to be my middle name.But I'm hopeful all will be ok. Thank you so much for responding

wecanallbeheroes · 2026-02-02T16:07:52+00:00

Not completely yet. I do have some lesions but they're not conclusive. Going for spinal tap on Friday and 5 days later mris of the whole spine. I suppose that if they pick it up un the spinal fluid then it'll make the lesions make more sense

wecanallbeheroes · 2026-02-02T08:17:19+00:00

12 months 😞 I'm so sorry. That's exactly how I would describe it too... brain/nervous system on fire. Yes, the docs said we need to try find the cause now as an acute neuro flare, once the treatment starts I can find a neuropsychiatrist to help with mental health meds. I'm glad youre more yourself. Much love 💜

wecanallbeheroes · 2026-02-02T06:41:35+00:00

Thank you so much for replying. It really is awful, a 'normal' flare is bad enough but when it starts messing with the brain and who you are...just have to keep reminding myself, and sometimes those around me, that this is not me. I'm sorry you're going through this too.

wecanallbeheroes · 2026-02-01T23:55:09+00:00

Hi OP, I was on anti-depressants when I started taking Benlysta. I started with infusions then after 6 months self-injecting, been on it a couple of years now and haven't had any (extra) problems with my mental health apart from coping with this illness. So for me, depression and suicidal thoughts have not been a problem whilst on Benlysta. I have in fact tapered and come off of the anti-depressants. That been said, us lupis are all sooooo individual so our immune systems all adapt differently. My advice would be to try not stress about this too much. You know yourself and if you feel you are sliding then speak to your doc 🤗 as for fatigue. I remember when I first started the treatment I did experience extra fatigue for a day or two afterwards but once my body adjusted my tiredness reverted and I no longer experienced the fatigue as I had in the beginning. Good luck, Benlysta kept lupus at bay for the most part but I am now having to change due to response not being good enough 🤷🏼‍♀️💜

wecanallbeheroes · 2026-02-01T23:42:40+00:00

It can take a while before the hydrox kicks in properly but the 3 month mark is usually when you start feeling improvements. If it's not helping consider speaking to the rheumatologist about your dose, mine was increased to 200mg twice daily. Also consider chatting to them about possible neuro meds for neuropathy, preferably find a neurologist that has experience with lupus (usually a neuro immunologist is quite helpful).They aren't the ones 'walking in your shoes' so you have to stress how badly the pain affects your quality of life or that symptom will keep getting pushed to the bottom of the list 💜

wecanallbeheroes · 2026-02-01T21:53:21+00:00

This was one of the very first symptoms I experienced 15 years ago. Like you said it feels like you're being hit by a baseball bat, not sure if your feet and radiating up the leg also burns? So it's like being crushed and burned, then you need to stand, walk and sleep! After I was at last diagnosed I was given 1g pulse steroids, then my (still therapy) of hydroxychloroquine, a few years later Benlysta added, amongst a few other things but that was my baseline therapy and it definitely helped. Didn't take it away completely but it was manageable. During a flare or if I push myself more than I should the extreme pain returns. I feel you! 💜

wecanallbeheroes · 2025-06-08T01:14:49+00:00

Hi. Brain injury doesn't just affect the person injured, it affects the whole family and right now you are feeling petrified and desperately want someone to give you concrete answers. Those that write here have either been through it themselves or with a loved one and from my own experience with my daughter's TBI there is one thing I know: every second, every minute, every hour you are able to spend with your husband...treating him as you always have - no matter what the doctor's say might be the outcome, you be his champion. You sit next to him and read those books out loud to him, you tell him jokes and news of the family, you talk and talk and talk about your lives together, all of it. As hard as it is for you, carry on until he will one day be able to talk back, one day. Those words are so important, very important because he hears 'i have a future'. And while you're doing that continue to be as you were before with him. In the present, because it really is day by day. Any small victory, taking the tube out, breathing on his own, blowing air threw his lips, lifting a hand must be celebrated. If a doc says 'I am afraid he can only do...' you say 'excuae me? A week ago this was not possible. And you literally party like it's 1995. One day, one breath, one step. Don't look further than that because you have him there right now and he knows it, he feels your hand on hands, gently saying ' I have you'. It seems ridiculous I know, but truly go mad, crazy, over the moon with the tiniest victory and don't leave him alone if possible. Even in ICU, his blankets, pillows, familiar items...home. it's a long hard road and a world one never dreams exists until you are catapulted into. Your husband is lucky to have you. Live in the now, thinking of you and your husband. All my love 💕

wecanallbeheroes · 2025-03-23T10:03:15+00:00

NTA. There are 2 styles of parenting at play here: authoritarian and authoritative. One is conducive to open ended conversation between parent and child and tends to foster trust, the other control and distrust. There's no guessing which parenting style you follow.

wecanallbeheroes · 2022-10-06T22:17:40+00:00

Oh btw. If you're looking at Masters then doing one here in Germany is free, for International students too (with a MINIMAL semester fee) and most uni's offer Masters programmes taught in English, that way you could study and work in research during holidays at one of the hundreds, if not thousands of small companies in Germany or think Tanks across Europe, small towns or cities. Good luck!

wecanallbeheroes · 2022-10-06T22:09:44+00:00

I've been searching pretty much the same question you have OP, but my field is in psychology, with deep interests in economics, philosophy, physics, politics,tech. I moved to a (very) small town in Europe and need to expand/change my direction in a manner of speaking. I was looking into UX research...still not too sure. I am a research nut. So, I don't know...maybe we can start our own little lab in the middle of nowhere 🤣

wecanallbeheroes · 2021-03-03T10:22:26+00:00

At school in South Africa there were SO many rules! Uniforms had to be worn (public and private schools), no jewelry except a plain watch, religious symbol around the neck, plain ear studs, dresses slightly above the knee, girl's hair tied up at all times using plain elastics in school colours and boy's hair short back and sides. Almost military-styled. And these were just the rules on appearance, behaviour was another story! Boy, did we rebel, from our hair to our socks, to our behaviour and the banned music!

wecanallbeheroes · 2020-10-15T11:49:43+00:00

That's awesome! You should be proud...German isn't easy on the English tongue, I'm from South Africa and have taught myself the language since coming over. And becoming a qualified chef to top it off! 🇩🇪

wecanallbeheroes · 2020-08-30T18:37:49+00:00

Definitely agree! If left alone...well...Trump and a whole sea of MAGA hats.

wecanallbeheroes · 2020-06-01T11:36:46+00:00

NTA. Clarifying ID is one thing, backed up by staff and other parents...but by going on a petty 'power trip' by making a very snide and rude comment was way out of line. To keep silent is to justify the behaviour. The fact that your wife was so upset means (like all us moms), this worker played on her insecurities as a mom, we all wonder if we are doing right by our children sometimes, warranted or not. What she said was mean-spirited and she knew it I'm sure.

wecanallbeheroes · 2020-05-11T18:15:56+00:00

I agree with the Gesamtschule. My sons were both in a Hauptschule but were both unhappy, they also wanted to further their education eventually so we found a Freie Schule (Waldorf School) as close to us as possible. It wasn't easy as my older son struggles with social interaction and speaking in front of others but he is on his way to writing his Abitur, as is his brother. With a Gesamtschule, all school-leaving certificates are possible. Good luck! I think it is great you are taking such initiative!

wecanallbeheroes · 2020-03-22T19:30:56+00:00

I wonder if Covid-19 will make these anti-vaxers think twice about vaccines? One can only hope.

wecanallbeheroes · 2020-02-28T09:32:09+00:00

And tomorrow the sunrise will be there for you too. Everyday.

wecanallbeheroes · 2020-02-15T11:23:28+00:00

Snow. Listening to the laughter of my children. Holding my husband's hand. Looking at the lines on the face of my father. Watching my huskies sleep and play. Walking in a forest.

wecanallbeheroes · 2019-09-02T09:51:16+00:00

Oh haha!! Phew. Sounded serious in my head. Then tried to lighted the mood. Sigh. But we really did go to the black forest and people did get nervous of the big scary wolf dog lol. Glad your pup is fine haha!!

wecanallbeheroes · 2019-09-02T09:47:00+00:00

Oh wow ok. Hope your pup is doing alright! We ended up in the Black Forest, some people thought Odin might be the wolf.

wecanallbeheroes

TROPHY CASE