Hello
Has anyone experienced neurological symptoms with SLE? I'm waiting to see neurology but a nurse I saw said it could just be my lupus.
I have weakness left leg, vibrating sensation left foot, ankle and knee and a numbness left thigh. I have tremors and involuntary twitching but my specialist won't touch me until neurology have ruled things out.
morning! Yes I had similar on the right side which turned out to be peripheral neuropathy caused by a lupus flare. I was treated with high dose steroids intravenously and tacrolimus. After about 8 weeks the worst was over and gone within about 6 months.
I have some residual weakness on the right side but it is not apparently obvious.
So..if it is …it should improve!
Hope that helps xx
May I ask how long you had your symptoms before they gave you the treatment? Xx
I’m trying to remember but a couple of months that’s all. Mainly because I was having trouble walking safely so they admitted me to hospital and so everything happens a lot more quickly as in inpatient.
I basically said I couldn’t cope with it 🤦♀️😂 which probably makes me sound like a drama queen 👸 but having had SLE for over 30 years sometimes you get fed up!
Anyway..good luck. And in your recovery xx
Thank you that's really helpful, take care xx
hi Sunshine634 - yep, me too, lots of weird neurological symptoms. The vibration sensation you describe I call buzzing - face, forearms, legs. Small areas of numbness in hands of fingers (but feeling always returned after about 6 months or so). Also random stabbing in torso mostly, sensations of heat and cold that come on in specific places, most peculiar is one that feels like trickle of cold water top inside left thigh - even though it happens a lot I always check to make sure I haven’t wet myself, just in case lol. Impossible to know with AI conditions if symptoms related but I think ok, I have a systemic condition, if inflammation anywhere in CNS I’m bound to have altered sensations somewhere. Had them over 20 years, they fluctuate in frequency and severity, every few years get something sufficiently new or severe to warrant neurology referral but otherwise I just accept and tbh whenever I’ve reported them at rheumatology review I might as well be commenting on the weather. And maybe in the AI scheme of things, these symptoms are just ‘weather’. Peripheral neuropathy does seem to be part of the lupus package though and as I’ve got older I’m more bothered by the PN in my feet than the other stuff which so far remains at nuisance level. Hope you get your neurology consultation soon and I echo Occasion99 optimism that it should improve with time 🤞🏻 x
Thank you, that's really helpful when I lay in bed at night I feel like I'm OK a vibrating plate. I also feel like I need a wee constantly due to the numbness inner thigh it's like having a fish sucking on the area like a dull dragging sensation very odd. It's been intermittent now for 6 months and the brain fog well its sometimes embarrassing, especially at work when delivering training haha
I'm sure I'll get some answers eventually bit thank you for your reply/support x
I was recently referred following consultation with GP about poor balance. Have lost some nerve function below he knee so the brain isn't sure where the feet are. Booked in for nerve test with electrodes at the end of the month.
I hope your OK!! And they think that it's due to lupus? Good luck with your scan xx
Thank you all for taking the time to reply, nice to not feel alone with it all! Fobbed off or added to another waiting list seems to be the way, my worry is I'm in my 30's now and has impacted my day to day how will this be for my future - private appointment booked let's see what happens I know im not the worst off in the world but to wait 66 weeks seems too long x
Hello Sunshine, I too have neuro symptoms - long story short - at the time I presented with a transverse myelitis (inflammation in the spinal chord) This was caused by SLE which had not been diagnosed before this episode. All my markers were off the scale for Lupus, but the Neuro Consultant just said "it looks like you have an auto-immune condition, but you are too old for this (rude!)(62 by the way) so I am referring you to a rheumatologist who can deal with this." The wait was about 5 months, so I too went private to get a diagnosis and start treatment while waiting for the NHS to catch up. I improved while waiting, but the hardest part for me was the reaction of the neuro team! I have residual neuro issues, but really hope I never have to see the Neuro lot again. I wish you all the best, keep your chin up and let us know how you get on, the support here is amazing. Hugs from Liz x
Thank you for your best wishes it is an amazing group!
Seems our lovely NHS is struggling I didn't want to go private I really support the NHS, my lupus is very much all over and now I've heard from others they have similar episodes I imagine that's what neurology will say. I'm hoping the MRI results are released that way it gives a better picture! We will see!
That is rude your life has just begun cheeky bugga!
I do worry that I won't get answers and be passed from pillar to post mean while wanting to chop my legs and hands off 🙈 I won't they are somewhat useful hehe xx
Hi there, I've experienced and currently experiencing, what you have posted but mine is in the right leg. I also get painful muscle spasms. Currently, it has become worse due to recently contracting COVID. Whilst being (for COVID) admitted to hospital, neurology said it was lupus and palmed it off to rheumatology. Although, this particular remark is not new and I've become used to it. Seeing rheumatology tomorrow, so I can't comment on the outcome yet.
To be fair to the Neurologists, I have - in total - 5 autoimmune conditions and 2 of them being rare, so it does make their job more difficult. Hence the back and forth like a ball game.
My only advise is to write down when and where it occurs on your body. The symptoms. You are going to have a lot of questions thrown at you, so just prepare. My only regret was not asking for a follow up appointment, just to see how things were in a few months. If this would have occured, the decline would have been observed. So, possibly ask for this as well?
Lastly, mine has progressed and due to having zero support plus fearful of becoming trapped at home, I've had to pay for a pvt chiropractor whilst waiting for my appointment. The exercises provide temporary relief but my goal is to build back up the strength in my right leg. Have you spoken to your GP about physio, whilst waiting for the appointment?
Hope the above helps and chin up!
Thank you yes that is helpful, wow 5 autoimmune conditions that's a lot!
I have seen my GP a few times now because my sensations developed and moved, I also saw on one of my referrals it said I was young and looked healthy which frustrated me what 33yr old falls downstairs on a regular basis because her leg gives way and has hands the size of sausages ha!
Anywho I've been referred to a few things but on waiting lists for all, just trying to do my norm as best I can and listen to my body when it needs rest.
The fizzing really is like some form of torture I wish it would just turn off like a constant nagging, when it's there I haven't found anything that relieves it
I have notes and like a weirdo videos of the tremors to form a timeline for neuro so fingers crossed x
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