Lupus and the nervous system / brain

[natal1a]

Hello all

I was just wondering whether lupus affecting the nervous system is quite a common thing,or not so much?

I've been having vertigo on and off for a year now. The past few weeks it's been a nightmare, have had pins and needles in my head and back, really bad fatigue, vertigo has been awful. I've had some tests done and there is nothing wrong with my hearing, no sign of inner ear infection etc. I'm having a brain MRI on Thursday and am wondering what they're looking for. Am worried because the appointment has come through so quickly (although if it took ages if probably be frustrated too ;)). If there is any lupus activity in the brain / nervous system how does this normally present and would it show up on MRI?

Thanks everyone

[Paul_Howard Partner LUPUS UK]

Hi natal1a ,

Cerebrovascular disease occurs in about 18% of people with SLE, so is not particularly uncommon. You can learn a bit more about lupus and the brain in our factsheet here - lupusuk.org.uk/wp-content/u...

[natal1a in reply to Paul_Howard]

Thank you, I'll have a read 😃

[baba in reply to natal1a]

Check out Hughes Syndrome/APS/"sticky blood" too.

healthunlocked.com/hughes-s...

[TM1970]

Hi,

I have cerebral lupus and brain scans can show patches of inflammation which is similar in pattern to MS and sometimes difficult to distinguish. I have electric shock sensations that to put it bluntly, feels like an electric toothbrush has been shoved up my nose. My neurologist says they are seizures and my brain is literally back firing. I am on a mixture of steroids, plaquiniel and ritiximab which has helped a lot but not completely. However the docs (my rheumatologist and neurologist work closely together) are less concerned about my discomfort and more about controlling the consequences of the seizures which seems to be happening (touch wood) Brain scans dont give an actual dx but they can see if there is any inflammation and they know how to control that even if they cant give a definite name to the cause. If there is a cause for concern they will order another scan so you have to be patient. My other symptoms are typical of lupus which made my dx easier. I wish you the best of luck and will help you as much as i can if you need it. X

[Hidden]

Please don't be worried. I've recently had my second brain MRI and the results showed some white matter indicating small vessel disease of Sjogrens, in my case. However the MRI showed that it hasn't yet progressed thankfully.

But I think you are much younger than me and they will be looking for signs of inflammation or lesions to rule out MS or anything untoward. If they find anything that might be part of your Lupus then they may change your treatment to something more appropriate

I too have a mild vertigo and a feeling of imbalance when walking. There are many things that can cause this but they obviously want to start with the more serious possibilities and that's a very good thing. I know it's scary experiencing all this but try to keep your imagination in check if possible. After all if nothing shows up then your worrying has been groundless and in the unlikely event that it does, would worrying actually help?

I'm a complete hypocrite in saying this because I'm the world's worst worrier!! But if it's any consolation I had this vertigo when I was much younger - for around six months - and again when pregnant with my first son in my late 20s. I still don't know what it was then (GP suspected Bell's Palsy at the time) but I do know I'm still alive and brain ticking and kicking a few decades on!

[Candyfield]

Hi there .I got virtgo 9hrs ago .I got a hole in my right ear drum .that I started to fill funny I felt like I was gonna fall over.drivein up hills I'd fill unsteady. Doctors gave me virtgo tablets left me on um 5hrs .but wiv the worry of it .I've now got burning braine itchynes on my head. I wonder if the virtgo could bin the start of the burning.wen I went 2 Windsor hospital 4 virtgo. She said u shount bin on there's for 5hrs .they only a cors. My doctors r rubbish .6hrs burning braine and virtgo. But reading bout virtgo I'm gonna tell my gp. Bout my virtgo it's a start .go and see a virtgo dotor sent u to virtgo .they can show u sum exsisering to do it dose help .I still get it but I no wat come in. But try not to worry coz like what I've brought on I fink bye virtgo .good luck x

[Bacardibabe76]

Have they checked you for Antiphospholipid syndrome? I get those symptoms and been told it's down to my APS.

Hope you get some answers soon x

[Candyfield in reply to Bacardibabe76]

Hallo thanks for that I will show my dotor .x

[Nat61]

Mine showed up on nuclear meds brain scan. Inflammation on the brain. I was so relieved to actually see proof of my symptoms on a scan. I was having memory problems and crawling sensation down one side of my back, and sometimes my legs. Hope this helps.