Hi just thought I would explain on here something strange that happened to me a few weeks ago to see if any other lupus sufferers have had this or similar.Sorry this may be a long post.
I had my usual 6 monthly treatment of Rituximab and Cyclophosamide infusions,usually the day after the Cyclophosamide i am very sleepy and sleep most of the day and feel really sick for about a week.I take anti sickness tablets for this.Well this time I woke the next day feeling sick but not tired,this was a Thursday.
Went and did a bit of shopping e.t.c with partner,by the afternoon I felt very tired so went to bed.
From the Thursday right through to the Sunday morning I basically did nothing but sleep,I just couldn't seem to stay awake was only awake for a total of maybe three hours during this time.
Sunday morning woke up feeling not too bad,got up dressed had breakfast and so on.Decided to go shopping to get our son some things,around 10:00 when we left I noticed my tongue felt strange like it was too big for my mouth,like the feeling you get at the dentist when they numb your mouth.I mentioned this to my partner but didn't think too much about it.Whilst out shopping we noticed my speech had gone a bit funny,me and my partner were actually laughing and joking about it not realising what was about to happen.
We decided to go home as I started to feel not right,whilst my partner was driving my speech started going more and more funny so he said he would ring McMillan nurses when we got home and see what they say about it.
For some reason I looked in the cosmetic mirror in car to see the left side of my mouth droop and I looked just like the person you see in the advert about strokes.Well as you can imagine we both panicked a little,my partner turned around and quickly got me to my local hospital which luckily was only about ten minutes away.When we got there a stroke nurse got me to do lots of different things pushing with legs e.t.c.By this point mouth was moving all over the place and I had no control of it at all.
About half hour after it all started everything went back to normal.This happened about five times in total over a period of a few hours each time lasting less time.
I had ct scan which was all clear.I stayed in over night and got let home in the morning.I went back a week later to see stroke nurse and consultant who said it wasn't a stroke but didn't know what it was.I had MRI scan which was also all clear.
I now have a neurology appointment 10th June,not sure what will happen there but hopefully get some answers about what it was.
Has anybody else had this happen to them before,it was very scary but not just for me but my partner and eight year old son as well.I keep worrying if it will happen again as we'll.
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mum-two
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Hi there, Hughes Syndrome appears in a percentage of people with Lupus and you can easily have TIA's which is a warning symptom. You need to urgently go and get assessed and tell somebody about this. In most people it will show up in a blood test, but in some it can remain stubbornly seronegative. I have both, plus 3 other diseases! Mary F x
Hi maryF,thank you for your reply.My partner rushed me to hospital while it was happening and I stayed there over night.I was seen by a stroke nurse and consultant a week later and it definitely wasnt a stroke.I have also briefly seen my rheumatologist since.
I was fully aware the whole time this was all happening,I have a neurology appointment on the 10th June.
It has happened once more since while I was out alone,but only my tongue felt funny again and speech went a bit strange.My mouth didn't droop this time.
Yes it will probably have been this; nhs.uk/conditions/Transient... and unless your rheumatologist is up on Hughes Syndrome they will not look for it! Do ask them, to look into this and do the blood test. It is a simple and cheap test, and if it is positive you would need to do something about it. Just rule it out, to be on the safe side. Mary F x
I am seeing my rheumatologist on Tuesday as I have a few other things happening at the moment.I will speak to him then,he is very good.
The hospital did mention it could be mini strokes at first but then said it wasn't.
Thank you for taking the time to reply,I was diagnosed with lupus 17 years ago but I'm sure you will know we get new symptoms all the time and learn new things about it.
Thank you I managed to see the second one.Makes interesting reading I have written the website down and will speak to my rheumatologist about it on Tuesday and see what he thinks.
I had this problem a few years ago and kept getting told its my heart but i was diagnosed over 20 years ago with lupus and hughs syndrom i am now on warfarin a very high dose as i have had 18 clots in my legs 4 in lungs and 6 in arm, however i have now been told the warfarin is no longer working but there in nothing else i can have as i have chronic obstructive airways disease to, i have to go into hospital regular and have IV HEPARIN to thin my blood as i allergic to sub cut heparin its nightmare, But touch wood i have only ever had 2 episodes of what your describing , please get it checked out with somebody who knows about highs syndrome.
Hi - I've just come out of hospital for suspected stroke - had exactly as u described very bad facial droop almost like facial palsy, slurred speech inability to get the right words out, even lost the feeling in left side of my body, also, inability to coordinate legs, blood pressure fluctuations from very low to high, I've been pretty much house bound since the episode which happened on 20th April - they discharged me from hospital as brain scan both clear. I have a sero negative connective tissue disease lupus like!! With livedo reticularis and sicca symptoms. Since Mary F told me about Hugh's syndrome I've been looking into it and it can cause neurological dysfunction. I'm under a rheumatologist but also got refered to a neurologist he was a nice guy and said it was a neuro dysfunction of messages not being sent to the brain but was not an organic disease. He has put me on neurontin/gabbapentin which will take 3 weeks to work. I'm not certain as yet as to wether I'm going in the right direction with this, I do believe I need to go and see proffesor Hughes to be tested for sero neg Hughes syndrome - I also have history of multiple miscarriages xxx wishing u all the very best xxx
Hi Jo883 sorry to hear what happened to you I hope the medication helps it not happen again.
It was a very scary experience and not being able to control what my body was doing was horrible.It didn't effect my legs or anything it was just my tongue feeling funny,slurred speech and left side of my mouth drooped.
Forgot to say before,the other episodes of it seemed to be triggered when I was talking,the doctors would be asking me what had happened and as I was explaining it to them my tongue would feel funny,then speech would go slurred then mouth would droop.
Each time I would shut up and everything would go back to normal.Each time it lasted less and less time.
This happened a total of about 5 times over a few hours.
I understand exactly what u r saying - I used to always suffer right sided facial ptosis and my top jaw would feel numb and the right side of my tongue - it had never affected the left side of my body b4. I just find it coincidentel that actually a few of us on here suffer with this problem and not all have Cerebal lupus. I really wish I could offer u more advice but I'm a relative novice - although have been having probs for 22 years I still haven't a definitive diagnosis, but I'm also still battling. I used to start speaking normally then it would become hard work my speech would change and become slower and my muscles in face would droop it would also be hard for me to concentrate on what anyone was saying and it would be a real effort for me to think and get out what I was saying also - I found that if I was in a room with people talking it would be like sensory overload and feel like the life was draining out of me. They may want to test u for myasthenia gravis to be on safe side - the neuro said I didn't have this - I'm waiting on another full set of bloods to come back. The meds I'm on will b upped again in 3 weeks. It has been pretty hard because I'm still having very sudden episodes of my legs just going and when I feel funny in my head (like cranial pressure) and word finding becomes difficult - that's usually when my face goes along with my speech - I'm going to stick with these meds, but I really do think my next step with be seeing proffesor Hughes. Just please be mindful until then - my first incident happen when I was driving - I had the good sense to swap. I'm not going out at all but the times I need to for Drs and meds I'm never on my own. I have had these turns whilst out and they have been really sudden both my rheumatologist and the neurologist saw my facial/speech/leg problems. I wish u the very best of luck, please keep me posted and I will do the same xxx my very best wishes
Thank you so much Jo883 for sharing what happened with you,it is nice to know I'm not the only person with lupus this has happened to (if you know what I mean).
It has happened once more since I came home from hospital and like you it was when I was driving alone.This time though my tongue felt funny as before so I just drove straight home by the time I got there about 15 minutes my speech had gone slurred.My mouth did not droop this time though so didn't bother going to hospital I did however make my rheumatologist aware of it.
Hopefully will get some answers on 10th June when I see neurologist.
There is also a funny type of migraine with aura where you often do not get a headache at all, but instead get slurred speech, numb mouth, weakness/numbness or paralysis down one or both sides, visual disturbances and obviously difficulty in walking etc and memory loss. It usually goes off in an hour or less, but can also return.However, not everyone gets all of the symptoms. Sometimes you get a headache following the attack but not always. The first one I had was very scary and friends took me straight to the hospital where initially they thought I was having a stroke, but no. Scan a couple of weeks later entirely normal. I now have these much less frequently thank goodness. They are very unpleasant, and I seem to remember reading somewhere that lupus patients are more susceptible to them, but cannot remember where I read it!! Good luck with your neurologist and hope they find out what it is.
Hi Riverbird,thank you for the reply.They ruled out migraine,infection e.t.c my inflammation levels were a bit high but not any higher than they have been in the past.
I could walk and everything was functioning normally,except my tongue feeling funny,speech slurred and left corner of mouth drooped.
It's very strange and horrible not knowing what it was,I'm sure we will get to the bottom of it soon.
It could be a problem with your trigeminal nerve, You can get a sudden palsy which gradually resolves, I get the tongue problems and twitching and tight feelings on the left side of my face I also have a very slight droop on my left side too, caused by Neuropathy so could just be that. Do you have any hearing loss with it? Hope you get some answers on the 10th x
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