Please could anyone who has had stroke like symptoms but nothing has shown on scans help me by replying below with your experience or send me a private message.
My hospital are saying they think my problems are functional although luckily my gp who I have been with for 25 years disagrees. I think it is because of my lupus and aps.
I hope if I have evidence that other people with lupus and aps have experienced the same 'episodes' they might review their diagnosis.
Thanks
Wishing you all a good day
Jane
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janekins
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I had several episodes of severe vertigo & numbness especially on the right side of my face, earlier this year. My GP thought it could be a stroke at first, but thankfully it wasn't. The symptoms have improved, but never fully resolved. Now I get balance problems & numbness that comes & goes. MRI brain scans were all clear so rheumy said it's not related to lupus, but could be caused by fibromyalgia. Is this similar to what you've experienced?
PS, I have a diagnosis of SLE, Sjogren's & fibromyalgia. I have tested negative for APS so far, although it is in my family.
In April the weakness and numbness was primarily on my left side though did find my right leg was weaker a few days later and had numbness on right side of my face. Two weeks ago it was the right side that caused problems. Like you I am still having balance and numbness problems.
I read the updates on this post & thought it would be helpful to add that since the above I have been diagnosed with sero-negative APS.
I was also a bookworm jane, but could not concentrate enough to read a book for sometime prior to my last flare. Thankfully that has improved recently, so I hope it does for you also. X
I have had numbness in my left arm and left side of face, it is lupus related, affecting the peripheral nervous system. Prednisolone resolved it but I get it now and then around a flare. MRI ok, heart tests ok too for me.
Thanks for replying purpletop. I'd been thinking it must be something to do with the nervous system as I also get itchy sensitive skin. The numbness is lasting a lot longer than before.
Luckily I'm up at London Bridge on 5 th dec. I didn't even see a rheumatologist when I was in hospital two weeks ago just neurology. I haven't seen my rheumatologist since May when she referred me to prof Hunt who said my previous symptoms were lupus related but didn't have an answer to my loss of speech. My INR was 2.4 and neuro doc in hospital said that's fine!!! I'm supposed to be 3.5 though !!!!
You're scaring me now, what is INR and should I know about it? My blood tests are all ok at the moment, though I'm not yet fully stabilised coming out of a 2 year flare...
Some people like myself have aps (sticky blood ) as well as lupus so I am on Warfarin and INR levels need to be checked regularly. If you're interested look at the Hughes Syndrome forum. If your bloods are fine please don't start worrying yourself purpletop
I am glad you have posted as I spent 3 months in hospital last year with stroke like symptoms, and because there was no scarring I was referred to psychiatry! I only got to see a rheumatologist a few months back because I paid to go private and she has now takeb me on on NHS and has started me on plaquenil. Although I haven't had a firm diagnosis she believes it is lupus related, although my bloods are currently ok, but have been very erratic,and unfortunately, over 13 months ob I still cannot walk without sticks due to left sided weakness.
I don't quite know what you will take from this but you are not alone, and If it is lupus related then great, because stroke damage can be irreversible and recurring. Hope you get answers soon xx
Goodness 3 months in hospital must have been awful for you!!! Glad you now seem to be getting sorted out.
I'm having to see a neuropsychologist but when I see him next week I'm going to be able to tell him that others have similar symptoms to me and try and get him to see that it might not be functional. The problem is, a website he referred me to, think it's neurosymptoms.org, has a list of functional symptoms but they're all lupus symptoms too!!!
Jane, have you tried steroids at any point? I had good response once I started with 15 mg of prednisolone, all numbness gone in few days after starting. Plaquenil takes ages to kick in and benefits joints and muscles more than nervous system, I wd ask the rheumatologist to trial you on low dose steroids and see. That way if it works, then it is likely that lupus is the culprit and if so, then it can be controlled.
I've got osteoporosis and think I read that you shouldn't use steroids. I might be wrong, but to be honest steroids have never appealed to me! Don't steroids make people put on lots of weight?
Not if you use them for a brief period of 5 days. Just to see whether is lupus related. Then you can look at alternative treatment but at least you know it isn't stroke. I know that we all still have to remain vigilant of stroke symptoms anyway but it might help distinguishing the two sets of symptoms and reduce stress and trips to a&e. your choice entirely, of course, I've just told you how mine responded, see what London bridge has to say. Let us know!
Thanks for that info and advice. It's good to hear about how the steroids have worked for you. I always thought steroids were a long term medication. I will definitely ask about steroids when I go up to London bridge.
I too had stroke like symptoms,loss of the use of my left arm and leg along with speech and memory problems,after blood tests,MRI scan,the only scan to give me a diagnosis was a SPECT scan.I am now on warfarin and do my own home testing.I had a mini stroke,but recovered well,but it did leave me scared for a time after.Since I started on the warfarin I am fine.I hope all goes well for you!
Hi.
I has severe stroke like symptoms in July this year and was admitted to hospital. I had slurred speech, left side weakness, confusion and disorientation.
The 1st Dr I saw said he want to do CT and lumbar puncture, however he felt these would be negative due to lupus being active and affecting blood, so he wanted to then perform further in-depth tests.
CT came back normal and I had a terrible time with lumbar puncture which was also normal. unfortunately the 1st Dr I saw had by this time gone off duty. The 2nd Dr discharged me, I couldnt even walk at this stage, and I was told to arrange my own care at home, I was not his problem, he did admit that he knew nothing about Lupus.
3 days after I was discharged I received a call from the hospital requesting I come back in, I saw a senior Dr who apologised for me being discharged and he wanted to run further tests. I refused to have them and booked a private appointment with Prof D'Cruz at London Bridge hospital the next day. Best £200 ive ever spent!!! Dr D'Cruz said he is pretty sure I had a TIA and INR levels were very high but he will never be able to confirm this as the hospital I was in didnt do the right tests. I later had an MRI which showed 2 areas of brain damage.
That's really horrendous!!! Sounds as though the first doctor was switched on and his comments are very interesting . So wish my docs had said something like that rather than suggesting it might be functional!
The behaviour of your 2nd doctor was unbelievable when you were obviously very ill. Thank goodness you were able to go to London bridge and get proper diagnosis. It's so worrying isn't it for us all isn't it when some doctors don't know much if anything about lupus!!
I have had right sided weekness in my left leg which I was admitted to hospital because if was thought I had had a stroke. my ct scan didn't show anything but the stroke doctor said to do an MRI and it showed 2 lessions on my brain so that was the second one I had had. This year it happend again with my left arm again sent to hospital and ct scan done but they don't always show anything which they agreed but didn't want to do a MRI just accepted that I had had another TIA. They took me off asprin and put me on Clopidgrel said it was better protection. I hope so because I am scared the big one is waiting round the corner. I have sle,ss and fibro.been diagnosed since i was 34 am now 56. I have grandchildren who I want so desparetly to be around for. So I keep going and doing everything I can to help my self. So get a deffinate diagnosis.xx
I know this is an older post but I have just come out of A&E for suspected stroke - whole left side body numb and weak along with speech problems facial numbness slurring and inability to follow people talking to me and saying the wrong words - I'm home weak, and still have speech problems - !! I have not got difinative SLE diagnosis yet - it's sero neg connective tissue disease - I'm off to c my rheumy in an hour or so - I just hope I'm not going to get fobbed off - I had fluctuating blood pressure in hospital from extremely low to extremely high, low oxygen saturation MRI and CT scan clear!
If you find any answers please could you let me know xxx Jo xx well wishes
Just reading your post, I am being discharged today from a 4 day stay in hospital. I came in on Sunday with a numb leg and they admitted me saying I had had a stroke. All results have come back clear so not a stroke although I am still weak on the whole of my left side I would say I am nearly back to normal thankfully. Such a scary time!! They have told me that the episode is due to my lupus. The week before I had terrible mouth ulcers so perhaps a warning of something to come. I had no idea this could or would happen!! Stay well! Kelly
Thanks for getting in touch. Interesting isn't it that a lot of people have had these symptoms. I am still struggling now. I gave up work on health grounds in March as a result and still use crutches to get around. I used to be an avid reader until April last year when this first happened but haven't been able to since as I can't seem to concentrate for very long. I have to rest every afternoon even though I don't do much in the morning. There really hasn't been a lot of improvement apart from my speech which is now fine although I couldn't say a word for 6 days when I was in hospital. Strange you noticed having mouth ulcers the week before. I had a very rapid heartbeat the week before!
I hope that you continue to improve over the next few weeks. X
Yes this has happened to me lots of times. At one point I was having stroke rehab for 18 months. But brain scans look ok - my local hospital thinks I am having TIA's but St Thomas' in London don't know what it is.
I have aps, pernicious anaemia and have lupus symptoms but am only weakly positive on some of the lupus tests so I am starting plaquenil after Christmas.
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