View Full Version : Strange episode,face looked like I was having a stroke.

05-17-2013, 12:37 PM
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.

05-19-2013, 05:52 AM
Hi ! It's so strange, I did not have this symptom ... not ever. I'm curios what the diagnostic will be in the end... I hope you'll be alright... Good luck !

05-19-2013, 06:38 AM
I hope we get to the bottom of it,somebody on another site did say it might be a TIA and to ask my rheumatologist about Hughes syndrome.

05-19-2013, 08:53 AM
Did the MRI show any white spots in your brain? I've had a lot of NDD strokes. Definitely see a neurologist. There is something wrong. Good Luck and let us know the outcome.

Good thoughts and hugs

05-19-2013, 09:04 AM
Hi I don't think the MRI showed any white spots as the stroke nurse said it was all clear and so was the CT they did while I was in hospital.
Forgot to say before but the other times it happened it seemed to be triggered when I was talking,the doctors would ask me what happened and while I was explaining my tongue would go funny then speech slurred and then the left side of my mouth would droop.I would then shut up and everything would go back to normal,each time it lasted less time.
This happened a total of about five times over a few hours.

05-22-2013, 02:57 PM
(touching envelope to turbaned head, ala "Carnac" - that's Johnny Carson, for you youngsters... tic) - I see EMG testing in your future... which can be initially distressing for some, including me, though it is manageable, just very strange, dependant upon what they test. My symptoms weren't as pronounced as yours, but I eventually included legs and arms in the mess. They initially thought I had Myesthenia Gravis, then maybe a myositis, then maybe MS. No-go on all of the above (thankfully). The current "thinking" is that it's migraine induced. Hmmm... One thing they discovered with me, what with all the testing, was that my B12 levels were way down, which can definitely affect your nerve senses. I now get monthly B12 injections, since I apparently don't absorb the stuff through the tummy (I was very low). Also, thyroid levels (my favorite subject) can affect your nerve responses. All of that should be checked. Best wishes with it mum-2. It'd be nice to find a quick answer, but be prepared for a bit of a time with it.