Lupus and Strokes. Are we most vulnerable?

[cuttysark]

I thought it was time to say a wee bit more about the latest " thing" that this mystery disease has brought me now.

I have always had seronegative everything apart from slightly raised ANA and ESR, but after years of shrugging at my myriad of dire symptoms a new Rheumy admitted they all seemed very significant ,and put me on a relatively low dose of steroids about 7 years ago and many of the dire symptoms improved enough to make life a bit more bearable at times.

I always had coronary artery spasms which gave me angina especially in cold weather but was assured by a good heart angiogram 9 years ago that I had excellent arteries, low cholesterol and low blood pressure so in little risk of strokes.

I have in the last year had worsening angina but it was shrugged off as pericarditis.

Suddenly out of the blue while on holiday late October I woke after a good nights sleep to be aware I could see only half my face in the mirror. No headache just a rollercoaster feeling when I walked and half vision.Thankfully two days later it was slightly better but by then a raging headache had begun.On the day before it occurred I had many bouts of angina however.

We were now back home and in the following 4weeks I was told by two GPs and two optometrists it was an ocular migraine, despite me telling them this was totally different. I couldnt drive at all, not hardly read ,and previous migraines had lasted no longer than a day.

Finally in desperation I went privately ,for a one off appointment to a neurologist just for reassurance, who said it was a stroke, flung me back into the hands of the NHS and got an MRI within two weeks. It was confirmed on Christmas Eve that a stroke was affecting the right hand side of my brain involving visual perception.

My eyes are fine, perfect even, but my brain is not picking up the signals the eyes are giving. I am told this damage will be permanent, so goodbye to my love of reading forever. I attemped to read a book with large print last week only to suffer serious headaches due to the eye strain.Looking at TV is almost impossible as bright colours make everything worse, and now when I look at photos of my family I see only half a face.

I know I should be grateful the stroke was not much worse, but I cant take aspirin at all due to chronic gastritis and they have not yet worked out an alternative. They say they are now arranging a CT Angiogram of my brain and neck and after that they will be looking at the pills again, so I am being well cared for at last.

Amazingly on being retested after a month I was told I can drive again as my long sight is fine as is my peripheral vision. I seem to he able to look beyond this area to a clearer area. But very close sight and especially reading is so so hard.

My neurologist was horrified that the four professionals I saw following the stroke missed it. He said it was classic, waking up with visual loss. They all expected a stroke to happen in only one eye ,but if the brain and not the eyes are affected both eyes will record the blurring. Most of the warnings we see on television do not mention this and quote other symptoms such as speech loss, drooping mouth, weakness in limbs, so many are missed. He said those symptoms would not be there if the stroke occurred in your sleep.

, Sorry this is such a long tale but I just wanted you all out there to be aware of the dangers lurking.

I have no idea if this was caused by my suspected Lupus or not and see my Rheumy in three weeks with many questions. But I know I was tested about 7 years ago for APS sticky blood ,which was negative. I have found out that APS can also be seronegative and that there are in fact three tests not just one ,which shouldbe done.

What I was not expecting too is how this stroke has affected me as a whole. I am now getting tingling and cramping in my left leg, left hearing much worse, constant dizziness and left side headache which only morphine relieves. There is also a peculiar fatigue when I have to take myself away to total peace, no sound or bright light.In fact it feels like I am about to have a migraine all the time, despite me having only half a dozen of them in my whole life. I am mid sixties now. I feel in fact a different person and now most aware of how devastating a stroke can be for so many people. I have been very lucky.

Neurologist reassured me this was Just post troke symptoms and might last a year or so!!

Anyway this has been a new learning experience I could have done without!! Thankfully I can still type as it is one letter at a time, and the self correction clears all the mistakes!! I will continue with trying to read though it gives me dire eye strain if longer then a few minutes. The optician is eager I keep trying rather than give in to the poor prognosis from the Neurologist. I suppose they are very aware of not giving false hope.

I might be lucky and recover more sight but I am also so so grateful it was not worse, yet terrified I am a ticking time bomb waiting for the next!

Hope this New Year brings new treatments and more enlightened medics who will understand what a tightrope we all totter along .

In fact often it is this wonderful forum alone ,which is our safety net against all that we fear.

I am so grateful you are all out there with your battles and your victories!!

[KayHimm]

I am so sorry you had to go through this. You must feel betrayed by the medical profession after they missed something so serious. I am wondering if any change of vision, numbness and severe headache should be added to the list of when to call 911. I go to a stroke specialist and her attitude is to err on the side of caution with possible stroke. She says they can intervene early and really help to prevent damage. I would say many lupus patients are high risk for stroke from the disease and treatment that affects cardiovascular disease. Thank you for sharing your experience. Others may add to what we should be alert to. Hope you get more vision back. K

[cuttysark in reply to KayHimm]

Yes KayHimm I do think they should be added, especially both eyes being affected as that was the main thing that threw the GPs. They forget the brain itself can affect the sight not just the eyes.Both were very experienced and excellent GPs, that is what I now feel a bit scary.

I suppose I should have just walked into A and E but with years behind me of fighting in my corner and always an element of MPTSD lurking it was the last place I wanted to go off my own bat ,and no GP referral.

To be honest the Neurologist was very kind, I think he felt really sorry for what had happened.

I had a friend with 30 years horrendous headaches and many lupus like aymptoms but she was seronegative bloods always . She had fibromyalgia or ME as a diagnosis and left to herself. She eventally deveolped strokes and low and behold after decades the bloods changed to show Lupus ,but she had had years of no immunsuppression. Sadly she died in her late sixties of a major stroke even though they had at last started treatment.

I think in my area now the Rheumys are much more enlightened and I am most fortunate to have an excellent one. Maybe things are changing a wee bit but we must all be vigilant.

Your stroke specialist has the right attitude ,to err in caution.

Many thanks for your comments.

[PMRpro]

I'm not a medic - but as I read your fifth paragraph I was thinking "stroke" and wondering how it was missed. But I suppose I do spend a LOT of time with GCA patients who are at risk of sight loss from what is effectively a stroke affecting the optic nerve.

The reading may improve - come over to PMRGCA and ask DorsetLady (for example) for advice. She lost the sight in one eye due to undiagnosed PMR progressing to GCA. I remember her saying the first couple of months were hardest as her brain adjusted but that's all, she rarely talks to us about the problems until someone needs the info.

There is lots of software available to cope with reading - contact the RNIB or their equivalent. Mail etc can be scanned and read to you, there is dictation software for writing - so much these days.

I'm so sorry - feel a hug winging its way to you xxxx

[cuttysark in reply to PMRpro]

Thanks so much for your help re the sight loss. That is just the practical stuff I need to hear and has cheered me up already!! And have caught that hug, most appreciated!!

At my first meeting with the neurologist he said he would organise me to attend the local stroke rehab unit but that is about five weeks ago now and I have heard nothing.

GP suggested I phone his secretary and ask.

Maybe he thought after the MRI scan there was no point, as he said that part of the brain seldom recovers!

But I dont believe him now after hearing what you have said!, XX

[PMRpro in reply to cuttysark]

There are theories that other parts of the brain are cleverer than a lot of docs think!!!

However - it is the basic practicalities that need to be addressed first of all. Doctors are perhaps the least useful there. Contact your Occupational therapy department at the local hospital to find out how to go about it - don't wait while it occurs to docs that they are not doing enough.

[cuttysark in reply to PMRpro]

Will do, excellent advice. It happened on 26th October so sooner the better!!

[whisperit]

Oh goshblimey cutty, what a tale! What a horrible Christmas you must have been having!

You have done us all a real service by sharing this experience; I do hope you feel able to keep us up to date with how things progress.

I've had periods when I've been unable to read and it is a cruel blow. Audiobooks are some compensation and Radio4 Extra does have a fair bit of drama and readings.

I've got nothing really helpful to say, but sending much love and good wishes x

[cuttysark in reply to whisperit]

Thanks so much for your suggestions Mike.

Can't tell you what a lift it gives me to know I have the support of all my friends like yourself on the forum.

Thing is you are all on the cliff edge too and so understand. XX

[honeybug]

Thank you cuttysark for caring and sharing this important info with your unusual stroke. You will help many members prepare for this.

Don’t give up hope for recovery. There are reports of people with half a brain functioning normally. People with traumatic brain trauma that do recover motor speech and vision functions.

Never let the doctors convince you that you’ll never recover because although their textbooks tell them this your stroke is unique to you and so is your recovery. The brain is such an amazing organ and so much about its function is still unknown which includes trauma recovery.

Sending you gentle gentle hugs 🤗 love 💗 kisses 😘 and healing prayers 🙏.

Best wishes and abundant blessings.

😊🌸🌿🦋🙏🤗💗🥰🕊👼

[cuttysark in reply to honeybug]

So appreciate your kind greetings and blessings and taking time to encourage me.

I was always a voracious reader and have huge motivation to keep at it so I think that can only be a good thing. It is true the brain is quite remarkable and I am sure there is more hope than what I have been told by Neurologist.

Many thanks honeybug! xx

[honeybug in reply to cuttysark]

Very welcome dear. Best wishes.

🤗💗😘🙏👼🕊

[Chanpreet_Walia LUPUS UK]

Hi Cuttysark,

Thank you for sharing your experience with us, this can be very helpful to someone who is experiencing a similar situation.

The heart can be affected in people with lupus, we published a factsheet on 'LUPUS: The Heart and Lungs' which you can read at lupusuk.org.uk/wp-content/u... (Text can be enlarged via the zoom "+" button on the bottom right of the webpage)

Please keep us updated, wishing you all the best!

[cuttysark in reply to Chanpreet_Walia]

Thanks Chanpreet for giving me those links. I will read up on all this as I see my Rheumy ,who is thankfully a good one,in a couple of weeks. He will have no hesitation incontacting the cardiologist who diagnosed the pericarditis last year and also the neurologist too. xx

[JaniceK]

I m so sorry to hear this my dear friend. Yes we do tend to take everything out NHS consultants, gps etc tell us. it is a case of our lives in their hands. As you know my own gp has been great and now this past year my consultant. I also visit rheumy consultant who did hit on Lupus with myself but then ruled it out.

Please keep strong and I will personal message you. Take care x

[cuttysark in reply to JaniceK]

Thanks Janice, got your PM too and much appreciated.xx

[EOLHPC]

Many thanks for sharing your shattering ordeal dear cutty: you write about it so beautifully & thoughtfully that i am weeping....every detail you’re sharing is already helping me get my head around HOW this can happen to us...and how to recognise it’s happening....we NEED to know this...i know for sure your post & this discussion is helping many others right now & will be ongoing, on & on

You are always so wonderfully philosophic about everything this life of chronic illness throws at you....you’ve helped me & so many others over the years...i feel very sad this has happened to you dear cutty...and am wishing you every best wish for recovering as much function as poss asap...AND also for greater diagnostic clarity re the immune dysfunction & connective tissue disorder underlying your manifestations

XOXOXOCoco

[cuttysark]

Lovely to hear your kind comments dear Coco. You of all folk have been through the wringer virtually from your very beginning and your courage gives us the will to cope, so thank you so much for all you do on here!

Ironically my husband also thinks that perhaps this stroke will on fact give me some diagnostic clarity at last!! So good might come of this in the end.

It could have been quite devastating and I have seen that at close quarters with a friend's husband. He was told four years ago after a stroke he would never leave his bed and now he can walk, feed himself and read again and is at home with his family, not in a care home.

My stroke was mild compared to that, but I was surprised how utterly vulnerable it has made me feel. Also like a similar post last week by Lupus Karen I am scared ,and dont trust the ones we look to for medical help any more!

We must look out for each other indeed and educate ourselves.

Thanks as ever, xoxoxo

[EOLHPC in reply to cuttysark]

You’re TOTALLY welcome...i feel huddy is right: there is a big opportunity in this...in my experience, when the system let’s us down badly, this can make well intentioned NHS colleagues personally take on referring us to colleagues (even in other disciplines) who may have special insight...i have greatly benefitted from this several times since my infant onset lupus diagnosis was FINALLY recovered in 2010

And yes, there are the recoveries of people like Andrew Marr...and l do have several close friends our age who have recovered a lot of function after strokes despite bad prognosis.

Am trying to restrain myself from tapping at length in reply cause am feeling so concerned about you feeling ultra poorly due to trying to read...please, when you feel up to it, could you give us advice: when & if we tap something to you, eg:

-Is reading typing in caps easier

-What is best re length

-What’s the best frequency for sending you messages

-Can we count on you not to feel the need to reply promptly?

For sure all of us want to avoid putting any extra pressure or strain on you...well. i hope i can dare speak for us all...

XOXOXOXO

[cuttysark in reply to EOLHPC]

That is really thoughtful of you, n fact it just shows in its own way I have actually come on quite a bit from end of October when it happened. At that point I could not have posted at all and had really poor concentration. I managed a few e mails to close friends and that was all.

To begin with every second word was blank white paper as if painted out. After a few weeks blurred letters appeared with clear ones inbetween.Now it is much th same but when I become tired the words do the old completely vanishing trick again and I get blinding right side headache.

But don't worry I know to abandon using my sight when I get tired and am beginning to read the signs better now.

This type is fine and shortish messages best, cut up into paragraphs if poss!

Thanks Coco once again! xoxoxo

[EOLHPC in reply to cuttysark]

Thanks &: YAAAAY dear cutty...had been feeling v anxious about tapping you anything...PHEW...you’re doing really well - just PLEASE try not to push yourself too much...but, hey, you’ve got way too much experience to do that (even so matron is lobbying to head north right now to be by your side!) XOXOXO

[cuttysark in reply to EOLHPC]

Looking forward to Matron arriving, she will stop me tapping away!!

I find I have bursts of activity for a wee while then zero for ages!!

I couldnt sleep at all last night, another stroke side effect it seems,so that is why I thought i would get it all down, or I might never have done it!!

[EOLHPC in reply to cuttysark]

Am so sorry!

This on top of all the other manifestations you’re always juggling....

Can you knit at all?

XOXOXO

[cuttysark in reply to EOLHPC]

Yes , that was the bottom line, I can still knit therefore I can live!!!!

I have knitted for so long my fingers just get on with it!

But patterns are difficult o read so everything has to be simplistic.

I usually count the stitches on my needle two at a time, when I look at the needle now there is just one stitch for every two!!! xx

[EOLHPC in reply to cuttysark]

THANK GOODNESS 😅😅😅😅😅

You are AMAZING 🌟🌟🌟🌟🌟🌟

YAAAAAAY DEAREST CUTTY 👏👏👏👏👏

XOXOXOXO

[misty14]

Dear Cutty

So sorry this has happened to you but thank you so much for sharing it !. You are so brave in all you have to put up with and you've written this piece beautifuly. Will make us all more aware. . It must be devastating to have such vision changes, we take our eyes so for granted don't we?. You make such a good point that your symptoms of a stroke were very different to the ones we all know after seeing that ad campaign. I wouldn't have thought stroke like you if I'd suddenly had them!. It is frightening what can happen to us and I'm like you in having low cholesterol, weight and clear arteries but the pericarditis none the less!. Makes you think then that it must be a quirk of lupus or anti phospholipid as you say!. Hope you get those all important tests soon so that you can be treated and get answers to your questions.

Do hope that you will get more improvements this year and lovely you can drive again!. Will keep fingers tightly crossed for you.

All the best dear friend for this year to give you better treatments. Xx

P.s had my injections today, lovely relief!.

[KayHimm in reply to misty14]

Misty — you make a great point that many of us would not know this was a stroke and an emergency. I think the threshold for neurological symptoms has to be very low for lupus patients. I have low level anti-cardiolipin antibodies, PFO, high lipoprotein (a). Even though I have never had a clot, I was still referred to a neurologist who specializes in stroke prevention. Because so many of us get unusual neurologic symptoms it is hard to sort out if it is a stroke or atypical migraine or something else. I just want to repeat what this excellent neurologist says: Do not try to figure it out. Do not call me. Call x 911. K

[misty14 in reply to KayHimm]

As Cutty has also pointed out lay him, I think the stroke guidelines need changing to take account of these differences!. It also proves that if in doubt about symptoms that are new we should get them checked out pronto!. Thanks for your lovely reply. Keep well. X

[cuttysark in reply to misty14]

So glad Misty you have had that vital injection!!! My pelvic nerve block isnt for a while, yet it is flaring early this time.

Great comments from both yourself and KayHimm below about usnot knowing if this was an emergency!

My husband looked it up on the I Pad and nothing suggested stroke as no other symptoms. It did look migraine like though I remember thinking it was something totally different from anything I had ever had before.

To be honest had we not been on holiday in Deeside at the time we would have gone to GP that morning as it was very odd , but didnt seem life threatening!!

Will he glad to chat to my Rheumy about it soon.

Hope this is a good injection this time!! xx

[misty14 in reply to cuttysark]

Hi Cutty

I've written a reply to Kay I think you might like above. It's really hard for us to know what symptoms we should act on. I think we really should be strong enough not to mind what an A&E doctor says to us if we're getting something checked that's different!. Easy said than done I know but it's us who have to live with the consequences not them!. Look how you have paid such a price!.

I'm sorry your pelvic pain is flaring early, hope it might settle again soon. It's a horrid pain!. I'm hoping for a good result again, have some blessed relief but back pain to get thru first!. When do you see your Rheumy?. Hope soon you can ask your important questions. Keep us updated how you get on.

TAKE CAREX

[cuttysark in reply to misty14]

Just found out I see my Rheumy on Jan 23rd and not 28th as I thought!!!

That was a nice surprise.

Am going to update him witha letter in the post warning of what is coming and hoping he gets his thinking cap on!

Strangely all the lupus like flares have been worse since the stroke, everything that has ever been sore is sore!!! Whole body not happy at all!!

I am going to be bold after all this, I now dont feel fazed by all those medics and would certainly march into A amd E if I had any worries.

We all need to keep our emergency bag packed and ready. xx

[misty14 in reply to cuttysark]

Hi Cutty

That is a good idea to write to your Rheumy before the appt. No excuses for not coming up with help, gives good thinking time!. Glad it's sooner than you thought, helps you thru. !. Interesting your flare seems stronger since the stroke, must be inflammatory related. It will be interesting what he says. Keep us posted and I'm glad you feel more empowered and your emergency bag is packed too!. Hope it won't be needed . TAKE CARE. X

[KayHimm]

I agree to get to try to get an occupational therapy appointment as soon as possible. You may be one of the patients who truly benefits from the therapy. And I think psychologically it is important for you to be starting therapy now so that you can know you are moving forward. Your story is weighing on me — just tragic you are now struggling to read, which was a great pleasure to. I completely understand why the neurologist was so sympathetic. He was probably very angry that this could have been treated earlier had you had maybe been alerted to risks. Wishing for all best in your rehabilitation! K

[cuttysark]

I am most grateful for all the advice and info about your own situation and certainly will follow up the Stroke Rehabilitation access.

they say the first three months are crucial and I have already lost so much of that.

The vision is usually slightly better first thing in morning for a couple of minutes then reverts to the missing letters and spaces. When I am tired it is impossible and I also get nystagmus when my eyes dart back and forth uncontroled ,trying to focus.

I know it would help me psychologically to feel I was at least trying to improve by getting professional help.

Will let you know how I get on! xx

[maggielee]

Just wanted to wish you well. What a shock to your system & huge adjustment.

You maybe able to watch some programmes on the ipad & use the ' blue shade ' filter to make it less bright....

I am sure there are lots of good advice out there, this is one I use especially at night.... ML

[cuttysark]

Thanks Maggielee, yes U tube has been my solace since this happened.

I cant watch TV as the colours dazzle and make the blurring worse but the screen on I Pad with light right down is fine.

Also watching someone talk is best so few changes in colurs etc.

My I pad is 5 years old and family are all planning to club together now and buy me a new one which will also have better light filters.

I honestly don't know how I would have managed without I Pad especially as I cant sleep much.

That seems to be a side effect of strokes. XX

[Flueby]

I am so so sorry to read this. I work in a neuro rehab unit and with lots of patients who have had stroke. Please ask to be linked in with your local stroke support group and/or stroke speculum nurse so u receive the right advice and attention for this condition in it own right and u may now sadly been classified officially as partially sited so please ask if there is a local sensory loss team (usually funded/staffed by social services) as their r aids and adaptations eg for reading,watching TV that could help. Otherwise contact RNIB for help with the visual loss. In terms of fatigue..neuro fatigue is a condition experienced by many post neuro event..this is somewhat different to lupus type fatigue but u will need to limit activity eg time reading or use of a computer and ensure regular rest after activity. Look up the Stroke Association for reliable information and advice...but don't frighten yourself with what "could have been". Take very good care of yourself xx

[cuttysark]

Thanks so much for taking time to give me that excellent advice and sorry to reply late but had a coule of days away from screens.

I really appreciate your observation that this type of fatigue is different from my usual Lupus type fatigue. It is quite scarey.

You are ao right about me having to limit time on compters etc. The day after I put in this post I was shatterred with the effort!!!! But I was SO glad I did so as the support has helped me massively psychologically.

I do recognise I have to be very very careful each day not to get over tired.

I was in touch with my Neuro's secretary and he wrote to GPs a few weeks ago asking I be referred to local Stroke rehab. I live in a different health board to the Neuro and hospital, as we are in a counry area outside main large hospitals,

I see GP this morning and will check this has been done.

You suggestions of accessing help for the partially sighted have lifted my spritis as I have totally given up watching TV by now due to the glare and colours.

So important too to dwell on the positive.It tends to be human nature to fear what could have been and fear it happening again!!! As time distances itself from the event that starts to prey less on your mind thankfully.

Many thanks again! XX