I've just been coming out of a flare for 4 weeks despite being on pred 7.5 mg and planquenil for about 2.5 months - I still felt pretty pants so upped pred to 10mg which rheumy said I could do - I started to feel loads better only did if for 3 days and felt better for it. On Saturday
I started to feel really odd and went from being really well to having sudden left sided weakness speech difficulties left sided facial numbness and couldn't coordinate my limbs - l ended up going into hospital as a suspected stroke - CT and MRI both clear and no vasculitis. I'm very weak and still have speech problems. I feel like I'm going mad. My oxygen saturation was low, my blood pressure kept dropping below 100 then when physio got me up to walk went up to 180 over something or other and I just felt the life drain out of me, it kept fluctuating rapidly. blood sugar was fine. Can anyone relate please because this is getting me down - is this just a bad flare - I'm happy the scans were clear but flummoxed and just have that am I going mad feeling they've said to go straight back to rheumy which I will do.
The only thing that I have changed recently is for the last 2 weeks the planquenil dose has been increase to twice a day. So was wondering if med side effect?! Although, 3 days b4 this episode and on Saturday morning I was fine, clear headed and happy!
I feel more lost then ever.
I feel like I'm drowning Help
Written by
Jo883
To view profiles and participate in discussions please or .
P.s I forgot to mention that I do usually get right sided facial ptosis and speech problems but usually on the right hand side of my face only. This time it was left side which has never happened b4 and left leg and arm also affected.
Sounds like autonomic dysfunction, with the yo-yo of blood pressure etc. Have a quick look into it and check whether you match symptoms. I would have suggested some nervous system issue but if your MRI is fine, the likelihood is much reduced. It could have been triggered by your flare, despite feeling better. Note that I'm not a doctor, I might be completely wrong, of course.
Just re-reading autonomic dysfunction and can take most of it along with some peripheral stuff. This sounds crazy but since this happened my stomach has also packed up! Which is really not me at all! deep joy upon joy! I've typed AD in combined with lupus and it gives you lists of each xx
I hope you get to the bottom of this, it is scary not to know. It's also frustrating that we have to do all the possible research and hard work in considering all the alternatives and then present the doctors with a summary for them to consider. I thought that was their job. Good luck, fingers crossed x
Thank you - getting help u need is not as easy as everyone thinks. Having others who understand helps keep conviction going. Trying to research it myself is the only way I can fight - its not that I want to talk myself into anything - it's just that I want them to understand I do know about some of my symptoms and what they could be related to so I can't b fobbed off!! This is my life and I want to live it to the best of my ability. They don't either understand/care that I have a family who rely on me and who are also affected. Thank u for yr time xxx love n light
When I had my crisis of health, my short term memory was shot, my vocab was pitiful and when I was tired ( which was most of the time) I slurred.
15 years later when I finally got my diagnosis, Dr Hunt at St.T's organised a scan as she figured slurring meant stroke. but the scan was clear. The idea of doing a simple crossword was painful and I felt like an idiot.
Try not to beat yourself up about it. It does get better.
Could you tell me how long your episodes lasted for please? This left sided attack seemed a lot worse - most of yr symptoms I can relate to well - did you ever get body weakness on same side or problems walking? They r scary symptoms. I loose total concentration if too much noise or too many people talking and go totally blank like its an overload!! I'm (was) a busy mum used to multi tasking now I can't walk and chew gum at same time - I have to think really hard to answer question etc.
Thank you for taking time to reply x I'm finding it tough atm, I really appreciate everyone's kind help and input!! Well wishes x
This is all too familiar to me. For about 4 years I didnt read anything and was pretty useless mentally. I had terrible fatigue and had become allergic to things like cats and house dust.
The weakness and muscular problems seemed fairly random rather than sided. And if I pushed my luck with effort it all went to rats. All of it.
The breakthrough really came from admitting that I couldnt fight it head on, I was ill and it was bigger than me.
You must learn to manage your energies and learn how to get the best rest you can.
I still dont always realise when I am getting frazzled and sometimes will take on more than I can handle and then have rest for a few days,. I go quite when I am tired.
I'm sorry to hear about your struggle - this sucks!
I am amazed I am allowed home to be honest - have these turns where the life seems to be draining out of my body! I managed to see rhuemy - he's referring to neurologist. I've had whole new set of bloods done - he wants me tested for myasthenia gravis also. My husband took me to hosp today for blood tests and I needed a wheelchair cos I just can't walk. I've been just laying there really and at times I feel breathless and shaky doing that. First minute of speaking and I'm ok they it just goes downhill - just tried to eat dinner at the table and my family are talking and it's like sensory overload - it feels like life is draining out of me and I just start keeling over - my arms shake as I'm typing this - you say you had a 4 year flare like this - does that mean your out the other side? I do hope so. Could you also advise what medicines you are on please? I'm afraid that this is going to get worse before it will get better and Im not really moving much at all - I have no idea what to expect either! My family are worried sick - there's a lot of crucial things going on with my kids - ie GCSE's etc and I just scared my 5 year old at the table! When I woke up this morning - I felt like I couldn't feel parts of my body. I seem to have been in a flare since last February - it started with joint pain bilaterally, hideous fatigue, ptosis and speech probs, had hair loss ulcers etc - the prednisone and planquenil have helped pain no end but compared to this that was a walk in the park!! When the stroke like incident happened it almost felt like an attack - if that makes sense - i came out of hospital on Tuesday and I'm no further forward in recovery - I'm too weak to panic and I know it doesn't do you any good - but sometimes I think - how can you be left to feel this bad - I'm hanging on by my fingertips! Well wishes, love and light xxx
I'm not usually such a big girls blouse about things, but this was quite scary and I'm lying in bed feeling like I have no strength - the first few words I say sound relatively ok but it just rapidly changes - my mum in law was asking what Drs said and I wanted to tell her B4 I forgot!! I think she was cross they sent me home because the speech thing is quite bad and if I keep talking its like my face seizes up and goes numb it's also really hard to concentrate on what people are saying to me and I have to concentrate on my replys and still can't find the words! I'm weak.
Purpletop - I've been researching still - from things Drs mentioned etc and autonomic dysfunction is on my list, along with hemiplegic migraine the latter cld I guess fit and I've read connection between that and SLE. I still feel desperate and clutching at straws.
Also looked up carotid artery because I've been saying my neck has felt swollen for ages.
Thaddeus
I usually get right sided facial ptosis and speech problems together but it only affects my face for as long as I can remember its always been right sided. It's never been pleasant but I could deal with it! This I've never had and was like a major attack of some sort. Both paramedic and a&e people thought stroke. I can't walk far without kinda keeling over its like I can't feel/coordinate my legs! Did you get better from this? Did it come in peaks n troughs or did it become more permanent? And I guess you still got SLE diagnosis? I'm going back to my rheumy I'm not sure if need to get neurologist involved also I will ask him. I'm quite tough but for the 1st time it's alarming and a bit scary. My whole family are worried sick.
I will let u know if I get anywhere - but don't hold yr breath!! It may help others that can relate.
I have been to the eye clinic today and been told my ptosis is down to wearing my Gp contact lenses for too long each day and because I have worn them for 30 years. I am due to start plaqunel soon ! So maybe it is a Lupus sign?
Do you also have confirmed diagnosis of SLE? I'm only asking because I'm classed as sero negative connective tissue disease (lupus like!) if these symptoms are cropping up with other Lupies then I guess I can notch it into that category, I do understand that Lupus can affect CNS I just don't know if it causes symptoms like mine!! And do you buy that it's down to yr contact lenses?!?? My face drops also with ptosis not just my eye! Also the speech probs happen at same time. Xx
Hi Jo,
My major flare which brought about diagnosis of lupus started with tingling and weakness down left side which I had investigated in turkey, which where i was living at that time, as 5.5 years earlier I had swollen optic nerves and more lesions on my brain than normal for my age but not in typical MS area, nevertheless my English neurologist predicted Id develop MS. after 2 months of MS testing and no medication, I got worse- bad posture, could only walk slowly, just couldn't think forget multitask, my speech became affected - started to sound Jewish and then deaf, I felt locked inside my own body. My mildly positive ANA result got me refered to a rheumy who diagnosed lupus with suspected CNS, lots of headaches, neck and ear pain, but symptoms worse on rightside,I was hospitalised, put on steroid drip for 3 days but had such major pain in my neck and ear, that I sat rocking and crying when the consultants came, they then gave me cyclophosphmide - totally reduced the pain. My speech was slow initially in conversation and then I got warmed up but after a short while Id get tired and it would slow again, still happens now on bad days but not to that extreme. At the time apart from an elevated white blood cell count and an ANA of 1:160 which isn't high my results were all negative, they treated me based on symptoms and not test results. St Thomas' confirmed my Turkish lupus diagnosis eventually, however on first returning my new English rheumy suspected MS again and sent me to neurologist who told me he didn't think I had MS or lupus but that I was just depressed and had been misdiagnosed and treated in Turkey - boy was I angry but at least my rheumy said he didn't know and referred me on to St Thomas'. I was told by Dr D'cruz that my lesions were TIAs probably caused by suspected APS - confirmed later, it hadn't shown itself originally, I have lupus anticoagulant. He said that APS can have neurological type symptoms. My rightside is my weak side but my lefts not perfect, lol. I suffer with joint, muscle, ligament aches and pains, headaches, brain fog, feel like an 80 year old, just slow, get periodic ear and neck pain, sometimes even my jaw hurts and when I'm tired which is quite often my brain and body go on go slow - hardly any clinical evidence for any of this yet I've not worked in almost 6 years as I'm just not fit enough. You're not going mad, try to tape yourself or get a witness to the slurring or altered voice etc. I feel for you, I really do and wish I could help more but I'm in a similar boat. Keep me posted of developments or if you find anything that helps. Xx
I managed to c rheumy yesterday - he says it could be a hemiplegic migraine, he also says it could be CNS Lupus and has ordered complete new bloods. On top of that he's sending me to a neurologist because he feels whatever has happened is now affecting my nervous system and is also looking at myasthenia gravis as he feels its affecting my muscles. Thankfully he got to see me with full facial droop and speech problems,which are worse then the right sided facial ptosis I usually have bcos when i have that i can still use my body. I cannot coordinate my legs and had to get in a wheelchair at the hospital to get my bloods done, I can relate to a lot of what you have written and i thk u for replying because if it wasn't for being able to talk to others that are in a similar situation I would feel a slight panic - knowing that there are many others that are fighting daily remind me that there is only one way to go and that is forwards, even my arms are weak typing this - I am being tested for APS again - at the mo I'm kinda house/bed bound with no way of knowing how long it will last - my pred has been upped to 10mg and I've been told to take aspirin until I see neurologist - I do not think it was a TIA that I had because the symptoms have not resolved, and I don't think there were any lesions on my brain!? They said no bleeding, I'm taking it as it was clear - once they deemed scan to be clear they discharged me despite not being able to walk more then 5 meters! I can talk for a short while then my face seizes up and muscles in face go funny and likewise with walking - I can just about get to loo - I cannot push myself at all just getting from house to car to go to hospital my legs would not cooperate and I fell in car park of rheumy - I also feel trapped inside myself - I am sad because I cannot take my 5 year old to school and also my 14 year old has got through to the national at ladies rugby and is playing at twickenham on Saturday - they are allowed to bring parents but I cannot go and need husband to help look after the children - so instead my daughter form tutor has paid for a ticket to go with Ellie! my children are my greatest achievement ever!! I do not consider myself able to drive so I'm seriously thinking of getting mobility scooter as there is also an award evening for my daughter on 17th may!! For now I can only hope that rest is what my body needs and I'm listening to it. I really hope things are much improved for you - please could you advise me on what level of meds you are on? I'm on 2 x 200 planquinel and 10 mg pred and baby aspirin - I think I need something else - but not sure what and nor will i be until they find out anything more. Also does this tend to improve over time? are better then you were? When you say the TIAs didn't show up earlier but were later confirmed - do you mean they didn't show up at first and do you have the answers as to why?? Sorry more questions - I'm lost and research is my way of fighting so I'm aware and won't let myself get fobbed off!! Love, light, and well wishes xxxxxxx
Wow honey. Push push push for treatment, go to A&E even if they dont get you a neuro consult promptly. I wasn't as bad as you when I was hospitalised and given 1 gram not mg of steroids a day over 3 days, then had cyclophoshamide (chemo) for a day which I then had once a month for 5 months. My rheumy authorised that in Turkey as the neurologists had spent two months testing. CNS was suspected and my rheumy was taking no chances seeing as Id had swollen optic nerves 6 years oreviously and had received no tteatment in that time. Honestly that heavy, hit it hard treatment worked for me and it is a recommended treatment for CNS involvement. There's a good lupus book by Dr Daniel Wallace, a leading lupus consultant in America, its the best out of the 8 I have, check it out.
yes I'm much improved in comparison, have days when my legs seem to have a mind of my own and I could easily belong to the ministry of funny walks. I'm permantly in a flare, lol, I've questioned this again and again, my hosp rheumy told me lupus leaves damage and my St Thomas rheumy said they just don't know enough about lupus, he compared the immune system to a spiders web and they just don't know every minute connection and interaction as each of us is unique, the tests are just general markers and not absolute which is why we have negative tests.
I came out of hospital in 2006 on about 70mg of steroids, imuran (aziothyprine), warfarin, and baby aspirin. Gradually decreased over 2 years, coming totally off to prove to the rest of the world that I wasn't just depressed. I wanted to go to St Thomas' drug free, how could any of my tests be positive when I'm on all the drugs???
It wasn't my TIAs that showed later but the APS (lupus anticoagulant, in my case. When I asked Dr D'Cruz from tommys if I might have had TIAs in the past, he said 'yes of course, we're looking at them'- we were looking at my MRI scans at the time. TIAs can be very mild and can go unnoticed really, you might have pain of numbness in some part of your body for a very short time then it goes but what I've never understood is why symptoms don't stay constant. It feels like my wiring is on the blink, can walk normally to a chair, after 5mins of just sitting I get up then start limping, or walking funny. Don't understand!!!!!! Jump up and down scream and shout, lol. Went to for acupuncture about 3 years ago and my acupuncturist always had to apply more electrical charge to my rightsided needles I order to vibrate them to a level I could feel. She said, "we say in China, your rightside die" but doctors aren't interested in what an acupuncturist might say.
Before Xmas I was on 2.5mg steroids, aziothyprine (imuran) - helped my neck and ear pain which steroids never did, warfarin, mood stabilisers, anti depressants - I have neuropsychiatric lupus (in a real loopy loo, lol) calcium & vit d - must take with steroids though I have oesteoporosis now.
Now, I don't take any meds but I can see my going back on them soon just going to try to steer clear of steroids. My body needed a break, I didn't know if my pains were lupus or side effects - I couldn't see how the drugs were helping. From Jan to mid March I've actually felt better on the whole, I think my body was celebrating the freedom, ive been more able to think and do tho my pain has been more acute. However I do need to go back on my pysch drugs, I was silly to stop the blood thinners and calcium but at least now I know, I'm starting to slow again. Couldnt take plaquenil, did try for 5.5 months but had a headache everyday, so I stopped, it was like having a metallic band around the base of my skull.. Look hun, I'll message you personally with my number so you can call me if you want to chat. I have a 7 and 11 year old so I do have some understanding - get in touch with young carers and local family charities, your school home link worker should be able to help. I pray that things get better for you Jo and soon. Speak to the rheumy about hitting hard and heavy with the treatment, it stopped my demise in its tracks but we are all different, just cant see 10mg of steroids being effective enough but Im not a doctor hun. Xxxx
I was told last year that it wasn't Lupus, I had a positive P- anca. Rheumie re did bloods and I am waiting on results but bloods done on ? SLE. 12 mths ago I was told ptosis could be Neurological. If its contacts why is only 1 side affected? I have left sided weakness. Got the impression that even if bloods did not show any thing new I would still be put on Meds. To be honest this is fine by me as I can not go on like this
Ptosis can be a sign of myasthenia gravis - sometimes it's only ocular meaning it only affects the eye and then there's the other type that affect most things - it is a neuro muscular autoimmune illness - there's that word again autoimmune! If you have a positive P-anca have you googled it and researched your symptoms? Yeah and I agree with the contact lense theory cos I wear contacts also!! So I'm not buying that - I think that's them not having an idea why tbh - I've had right sided facial ptosis on and off for about 21 years - I was tested for MS when I was younger and was clear - it's only since I've seen this rheumy that it was even given a name - I have been living with various things for 21 years and I too have had the psychosomatic label - when I was 19 I may of taken that - and I think my attitude was well if I've done it to myself - I can undo it! Here I am still, getting the help you need is not easy. So please don't let them fob you off regarding anything - if I doesn't fit you then don't accept it! You know you more then anyone. I am no expert at these things - but I have already realised there are some wonderful knowledgable people here that are willing to help through what they've learnt through there own experiences - and I for one am very grateful.
Thank you for replying to my post, keep me updated with your blood tests honey. I wish u every luck with your quest xxx
Interestingly enough I have just found an article on people being treated for SLE starting hyroxy (?) planquenil and symptoms of myasthenia gravis - whether it exacerbates existing symptoms or is triggered by it?!? Don't forget I started with right sided ptosis - just throwing it out there!
I feel for you I really do. If I were you id get myself an appt booked with either Prof Hughes or his team at London bridge hospital. Explain that you need an urgent appt. Get copy of MRI scan sent to your g.p and take with you. Prof Hughes will view it . Also take all blood results recent and past. It is 190.00 I think for first appt but in your case babes I think you need some diagnosis and treatment. Your steroid dose seems low but maybe your rheumatoagist may think you have an infection of some description. In which case upping steroids untill infection dealt with could make matters worse. Defo agree that if U dont see Prof Hughes then you and your husband have to start shouting to get some fast answers. I know how hard it is when you are so poorly to have to fight. But you must, take husband with you too. Please us know how you are. Get hubby to keep diary and take pictures. I understand he must has a zillion things to do but could really help towards a faster diagnosis. Thinking of you xxx
Hydroxy gave me my life back, but for the first few months I didnt dare sneeze if you know what i mean, some people cannot tolerate it, but if you can it is brilliant.
I also take Omacor omega in large amounts this is for my huge blood fats, but it has an anti inflammatory effect which helps the cramps a lot.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
but flummoxed and just have that am I going mad feeling they've said to go straight back to rheumy which I will do. 
- I have to think really hard to answer question etc. 
my children are my greatest achievement ever!! I do not consider myself able to drive so I'm seriously thinking of getting mobility scooter as there is also an award evening for my daughter on 17th may!! For now I can only hope that rest is what my body needs and I'm listening to it. I really hope things are much improved for you - please could you advise me on what level of meds you are on? I'm on 2 x 200 planquinel and 10 mg pred and baby aspirin - I think I need something else - but not sure what and nor will i be until they find out anything more. Also does this tend to improve over time? are better then you were? When you say the TIAs didn't show up earlier but were later confirmed - do you mean they didn't show up at first and do you have the answers as to why?? Sorry more questions - I'm lost and research is my way of fighting so I'm aware and won't let myself get fobbed off!! Love, light, and well wishes xxxxxxx
Has anyone had problems with Azathioprine?
Hi. Does anyone know about CRP levels please 
Sunny weather and flares, help!
Methotrexate and Tamoxifen anyone?
Does anyone have night sweats and aches and pains tapering steroids?
