I thought it was time I should give a wee update on how I have managed since my stroke at the end of October and it felt the right time as Katydid has just posted below about the same!
I remember telling everyone it was diagnosed almost five weeks after the event, almost five months ago now ,and dismissed as a harmless continual migraine by two GPs and two optometrists. Finally a neurologist said it was a classic stroke that I had during the night in my sleep ,affecting the visual receptors in my brain.
I had blurred vision and could hardly read at all every third word was completely missing. I also had a bursting awful headache and visual hallucinations. The prognosis for sight return was very poor I was told, but I persevered with bright light behind me and just taking time every day to try to read. This gave me dire eye strain but I munched through endless painkillers and persevered. I could not drive for a month but tankfully peripheral vision and longsight was fine as eyes themslves were OK. Reading and anything up very close is still a challnge but improving thankfully. I have been told I am terribly lucky as many folk are blinded by damage in this area.
The neuro also delivered a bit of a shock recently when he got the full MRI report at the end of January as quite a large second stroke was discovered in the central part of my brain. He said it could have occurred a few years ago and any symptoms could have been dismissed as the connective tissue type autoimmune disease I also have.
I can take no aspirin, not even the coated one, and am as yet on no blood thinner which I find rather scary, a bit of a walking timb bomb feeling in fact. A CT Angiogram was attempted two months ago and they could get no vein to access so that was abandoned and another wait of 5 weeks till they did an MRAngiogram with no tracer.That was 10 days ago and I am awaiting the result of that as the neuro suspected I have had another stroke , a third in late January!!!
Considering all this I can’t believe how slowly all the tests are done to enable them to get me on to warfarin or apixoban!! Maybe as I am 65 I am not a priority now!! Shelf life is over!
Anyway the big question was WHY I had a stroke. I was told I was not a candidate, as have normal BP and low cholesterol ,so after much head scratching the Neuro and Rheumy and cardiologist are now saying cerebral vasculitis.
I also remember on the week preceding my stroke I had angina every day when out walking my dog and was almost overdue my four monthly steroid injection. I also take 5mg oral Pred daily. This has been my regime for the last five years but maybe it was only just holding back the dangers of the vasculitis they didnt know was there. I have always had normal bloods apart from raised ANA and ESR though both of those not striking at all.
So according to the medics I was low risk for anything really serious!!In fact they were doing me a favour they thought by keeping me on a steady steroid dose.
I am also alerted to many MS like symptoms I have had over the past twenty years. And in fact Karen1063 asked me a question about that yeaterday on an old thread of mine relating to a post 4 years ago.
Now all this time on I am starting to connect up the symptoms and wondering if this suspected cerebral vasculitis has been cooking away for in fact a very long time. Trouble is no one links it up. I saw my Neuro two years ago with a numb right leg amd foot and balance symptoms lasting over six months, maybe that was in fact the first stroke, but no one did an MRI at the time!!!!
I honestly dont know if Neuro lupus would show up on an MRI. he did say two weeks ago there were no MS lesions at the moment though I do have MS like symptoms most noticably Uthoff,s syndrome, when all my muscles collapse in heat. I can stay ina bath no longer that two minutes or I cant get out at all, not even a mildly heated swimming pool. Hot weather is totally impossible. This is most particular to MS but must instead with me be linked to the vasculitis or connective tissue disease itself. I don't have any formal diagnosis of Lupus.
I would be very interested to hear how many folk out there have cerebral vasculitis as I think we must all be in grave danger of being ignored until the damage is done and numerous strokes have occurred.
At least I feel the various medics are all listening now ,but those tests all seem to take ages ,when you dont know what the inflammation is quietly cooking up next for you!!
Thankfully I am due another steroid injection next week and then a trial of azathioprine, but they want a colonoscopy and endoscopy first, as they also suspect ulcerative colitis on top of the years of chonic pancreatitis!!! It goes on and on but foremost in my mind are those silent sneaky strokes!!
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Thank you for your update. I remember your original post well. My heart goes out to you. Not knowing the cause of your strokes has got to be scary. With your connective tissue disease and low risk, it sounds like a challenge to figure out. Did they mention cerebral vasculitis specifically? There are other ways autoimmune diseases affect the brain and show up on MRI. Hoping they get to the bottom of this and you get on preventative treatment soon.
Thanks Kay for your comments. Yes they all agreed cerebral vasculitis was the most likely contender and all felt they had to up the immune suppression.
I had the MRA about ten days ago and am awaiting Neuro’s letter with result.He did say though he might want to try again with a CT Angiogram with tracer if he needs a more detailed look.
I think maybe they have to look for any bulges on arteries before putting you on one of the stronger blood thinners.
I see. So complicated. Your age should not be a factor in how fast they do studies at all. I know someone who is in her fifties, had two strokes and it is taking a while for the doctors to make a decision. She is treated at an excellent American academic center. Oh, this is so hard on the two of you. You might want to ask your neurologist if they could have detected the vasculitis earlier. It is a little surprising you did not have the MRI sooner. Do you have a history of cardiovascular disease in your family? If so, you may want to ask for a lipoprotein (a) test.
Interesting and also reassuring that your friend in a centre of excellence is also having quite a wait for treatment! She is also younger than me!
I have actually had quite a few brain MRIs in the last ten years but all related to a cervical disc fusion ( prolapsed disc touching the spinal cord and operated on as an emergency)eight years ago. After that was done I still had MS like symptoms and my last MRI done before the stroke in October 2018 was 5 years ago, It revealed nothing.
So I had one MRI in December which revealed the two strokes and a repeat MRI and also MRA done ten days ago.
I see my rheumy next Wed, he is excellent to get info from ,so I will ask about the test you mentioned. I possibly wont see the neuro again for a while as he said he would write to the others and myself with result of MRA.
You are so right about thinking outside the box!!! The longer I live, and I realise this “thing” has been following me about since my early twenties. I remember at thirty thinking, there is something really wrong with me that they will likely never find out ,until my life is just about over!!
St least I have had 10 years of steroids and 5 of a stronger amount. Maybe that has actually held back some of the damage.
But we must realise when we feel really ill, we are usually right!! No one understands our body like the owner of it!! X
Yes, I had the same feeling. I knew my « weird head » stuff was not « constitutional » from my UCTD. Eventually, I was told « low level CNS » involvement and had an abnormal MRI.
Oh gosh cuttysark, I remember many of your posts over the years. Really sorry to hear all this and it must be scary.
I'm just wondering whether they have considered a ct/ pet scan? I had one a couple of weeks ago for vasculitis although not specifically for cerebral vasculitis. They were looking for medium/ large vessel so I was scanned from eyes to thighs. I have absolutely no idea if that is something they could consider for you?
Appreciate your suggestion of a PET scan and thanks for your good wishes.
I see my Rheumy next week and he is excellent and really listens . I will ask him about it.
TheNeuro is in Queen Elizabeth Glasgow and Rheumy in Glasgow Royal but all under same health board. I myself though live in Ayrshire ,but due to complexity of everything over the years ,am mostly treated at the bigger hospitals in Glasgow.
Problem is that it is all complex, for them too!!
I will feel a lot happier hough when I am finally on a blood thinner.
It is comforting to hear of folk with vasculitis on the forum who are on warfarin and doing well.XX
Hi I’ve been reading through all your posts as if I’m right there was a worry over ms ? Have you had any positive blood work for anything ? My reason for asking is that I’m struggling for diagnosis.
My mother had ms ( she passed in July )
Two months later I was diagnosed with ms to have it thrown out because the lesions are in the wrong area of the brain and lp was clear.
My lymph nodes are inflamed in my neck and my moth is sore and Tongue is swollen I get lot of twitches all over and in my tongue also jolting limbs funny can’t describe vision
Al my bloods are negative ana everything. I was told looks like lupus but no evidence in my blood so also thrown out
To now being told it’s in my head after watching my mum pass and the lesions are silent migraines see you in 8 months ..
I live on one of the islands so a bit of a pest having to travel. The rheumatologist now come up here but they are very accessible by email etc. The dr I used to see I now realise had ignored a lot of my issues and I am in a bit of a mess especially in the vascular and nerve dept. A good dr makes all the difference and one that isn’t afraid of referring to other specialities and working alongside them
Glad you got some really interesting replies from AnnyNC and Kim over on the other thread about the MS.
All makes a lot of sense really that our antibodies are fluctuating a lot of the time and there are various triggers such as heat, dehydration and viruses that cause flares of those neurological aspects of our disease.
My neurological symptoms rocket when I have a virus.
My bloods were completely negative for decades till ten years ago I developed Addisons and had to be put on hydrocortisone to help that. That was why I was initially put on steroids.
As time went on my ESR rose a bit more and also ANA rose which had previously been borderline.
I was given plaquenil but could not tolerate it at all. I have had severe gastritis all my life and tablets are difficult to deal with. I can tolerate opiods no bother though for pain and get very few problems with them,even morphine which I find less constipating than codeine.
They say I am negative for APS but I was plagued by phlebitis years ago and had to use heparin gel every day on my calves. That vanished as soon as I began the steroids.
Am so sorry you are being sent away to try to cope and come back in eight months. It is very worrying especially as your Mum passed away with MS.
I also have a lot of MS on my mothers side.
I have never had an LP so I think my brain scans must be pretty negative for MS n the past.
Now the problem is that the numerous neurological symptoms which I get so frequently are sometimes indistinguishable from strokes or TIA’s. All you can do is get to know your own body as I am sure you already do, and get to the hospital if stroke like symptoms occur. I now know in hind sight I would never feel bad about walking into A & E with no GP referral.
We have o be our own advocates and detectives in all of this, sometimes our lives depend on that ,sadly.
Hope you get some answers, nothing worse than the years of waiting. xx
MANY thanks for this IMPORTANT update on your strokes & cerebral vasculitis, dear cutty! I have been on the edge of my seat hoping you’d share more news here
There is little i can add to this WONDERFUL discussion except to say that my understanding of my version of this is that it is my early onset small vessel vasculitis which is one of the main causes underlying my longtime neurocerebral manifestations which, lucky for me, have been responding positively to daily myco (1000mg) + pred (10mg) for some time, after several years of only hydroxy + lower dose pred tapers leaving me inadequately medicated. And i have a history of MS-like manifestations (nhs tests were neg in the 1990s), relatively low BP & cholesterol + very early onset: severe cervical spondylosis + other cervical spine issues, dysautonomia, syncope, migraine, peripgheral neuropathy, etc etc...all my life my neurocerbral sympt9ms have rocketed during all AID & PID flares (inc any infection: viral, bacterial etc). As you inow, my early onset Antibody Deficiency Disease means i’m seroneg
And lately my BP has been leaping up over 200, which has my rheumatologist & GP even more alert to the possibility that something is getting more “iffy”. Over the years we have discussed the possibility i have had mini strokes over the decades, but i have declined further investigations because i just always had too much being investigated & treated that’s serious & urgent (eg most recently the intestinal failure + now the lower spine neurosurgery). But now special BP investigations have been ordered (the latest is new to me: 24hr ambulatory BP monitoring (i’ve already had 24 hour ambulatory ECG several times which, despite my various manifestations, was rated as “normal” haha...we all know what that means)) and i won’t be surprised if all this is the next thing we tackle...so EVERYTHING you’ve been sharing & are continuing to share about this is ULTRA timely for me
As you know, debilitation due to my neurocerebral condition is the main reason i am often unable to participate actively on our wonderful forum....and for 2 years now this has gotten worse....but i do read as much i can and am HUGELY grateful to you for your INVALUABLE long informative, deeply thoughful, beautifully worded testimonial posts: every detail is crucial to my understanding of both this complicated issue “henerally” as well as to & our own individual signs/symptoms + to my confidence when “trying” to discuss this with our medics. I cannot thank you enough. You are SO BRAVE! You are my inspiration! But i WISH none of this had to happen to you....
My dodgy brain functions best first thing in the morning, so i have put it to work on studying this discussion & trying to compose a reply that makes some sort of sense, hopefully...sorry for going on at such length & rambling so much...am all tuckered out now...brain is flopping...am just feeling SO GRATEFUL to you & everyone who has responded: THANKS
Looking forward to your next update! Wishing you every best wish! XOXOXO Coco
Thanks so so much Coco for harnessing your brains bounty time in the morning to send this interesting info.I am much the same myself in the mornings, by evening I am a brainless blob!
Thank you too for your most kind comments. I dont really think I am very brave at all, just stubborn!!!
I have had a relatively easy run through compared to yourself dear friend. I am truly amazed how you have coped with extremely serious aspects of this disease. And you only relatively recently have had a definitive diagnosis, even though your Mum knew all along when you were a tiny child, so heart breaking that!!
I did not realise that you too have the suspicion of tiny strokes over the years. I suspect some of the “ brain fog” we all seem to universally suffer from could be that in disguise sometimes!!! Hopefully not every time or we would have had no brain left by now!!!
I have been trying to read some books about brains and strokes to cheer myself up!!!!. My eyesight is about twenty percent of what it was previously, for reading, but today I am going to the optician to see whether a new prescription for my left eye would help the blurring.The orthoptist at Stroke Rehab at the hospital last week suggested this.
The Neuro has always said No ,but I have also had improvement to vision that he doubted too! He is a really nice man and didn't want to give me false hope!!! But it is remarkable what simple repetition of a task can do. Had been fascinated by reading about a man with only about half a brain left ,who recovered virtually all function!!!!!
Interesting about your BP. We are both the same age and now both have seen a rise in BP. I had the BP monitor for 24 hours last week and it is thankfully looking fine just below the vital level.My Rheumy said it was spiking every time I went to the clinic, but that is after a long drive to Glasgow and a hike from the car park in mid afternoon! My top level was often high on the monitor but balanced out by some v low levels too. Have been on a low dose atenolol for fifteen years.They want me to put it up a little more now.
The hardest thing as you know is to keep battling on when they are no answers and no diagnosis. In some ways although those strokes are a total scunner at least they are a firm diagnosis that can be seen, like my blown disc in my neck years ago, and phlebitis in my leg.
I used to even prefer the dentist, all you did was lie down and open your mouth!!! No words , nor history of symptoms , nor explanations and feeling they didn't believe you!!
Thanks for the effort of replying, I know how tough times are for you just now.
I so appreciate all the ideas and suggestions folk give me here, we are the true detectives .We are the troops on the front line whereas the consultants are way back having a smoke in the woods ,while we bow our heads to escape all thrown at us!! But we do have each other and that is what matters!!
Hope you have a better day today, nice spring sunshine up here this morning. XX
Thanks cutty: both your reply & twitchy’s give even more INVALUABLE info! Of course i have early onset sjogrens too - last week my cornea consultant said i must stay on this new type of cyclosporin drop daily long term despite the dangers because it’s helping me hugely but he can tell inflammatory process will ramp up again if we let rown our guard. And my consultants say sjogrens is implicated in my neurocerebral stuff & my GI tract stuff...as well as all those other body systems p: uro, gyn, ENT etc...what a life...XOXO
Hi Cutty. Wow this is a big one and must be a very worrying issue for you. Especially all the dilly dallying about now! My Inverness pal who has haemophilia (unusual in women but my cousin also recently learnt she has it and has just turned 70!) had a stroke several years ago and they delayed and delayed with her too - no one wrote and then she saw her GP quite crossly to comment on lack of follow up and was offered Warfarin - which of course she can’t take because of her haemophilia?!
She was in her mid 50s and has re taught herself to be a dancer against all predictions of her doctors! But maybe it’s NHS Scotland we need to worry about rather than specific hospitals here? Even right now my GP practice have messaged announcing that one of their 2 branches will have to close on Mondays due to operational difficulties. I know this is due to their struggle to find a replacement practice nurse. Hard times are here.
Thank goodness you’re now under a good rheum and neurologist at least because I know you weren’t for ages.
Re Cerebral Vasculitis and neuro symptoms - this is what they check me for every year too because of high risk with Sjögren’s. So far the existing white matter on my brain hasn’t changed so is viewed as damage done (Sjögren’s). Now I may be wrong about this but I think neuro Sjögren’s is the most associated with cerebral Vasculitis and also that you do have diagnosed Sjögren’s? Just a thought. I think this is why my headaches and nausea are being evaluated sooner than otherwise. But nothing urgent mind - because - like yourself, I just have raised ANA and inflammatory bloods. When will a day come when they realise that bloods aren’t everything - just one part of the picture?
Both my parents had vascular dementia and heart problems in the run up to their premature and sudden deaths so I fret as the NHS failed to pick up my mum’s angina and my dad’s vascular dementia in time - and that was in London in 15-10 years ago and they both were rushing about the world hoping that their symptoms would disappear in a state of denial about their very obvious cognitive difficulties.
So I think you’re going to have to be very proactive about getting treatment. 65 isn’t old and you’ve done so good with your vision - it’s now up to others to pull their weight! 🤗🤗🥰
So appreciate your input Twitchy!! Interesting about the vasculitis Sjogrens link.
They were convinced I had Sjogrens for years with the pancreatic involvement like yourself ,but I had a nagative lip biopsy about 17 years ago which they recently found. After that I think sjogrens has been binned for the time being and just a “ connective Tissue Disease” the main contender.
I actually told the consultant a few months ago that not having a label can be dangerous. It makes you complacent and think you must battle on through the worst days ,as what you have is really “nothing”. When I had the stroke in October we were on holiday in Aberdeenshire and husband said I was marching about like a demented thing trying to get fitter as I felt so hellish. I was slapping on nitrate patches for my angina and battling on.
Then at the end of that week, came the stroke!!!
Now I am very very careful, lesson learned !
I do agree with there being an all Scotland “go slow” just now, everyone is waiting ages for tests and results of scans, especially in radiography. And that is even in major hospitals for neurology like the Queen Elizabeth.
Feel so bad for your poor Mum and Dad both battling on and being felled far too early.
You are so right, we must fight in our corners and be proactive! Xx
I wouldn’t pay too much heed to a lip biopsy result done while on steroids 17 years ago Cutty. Nor should your rheum. Seronegative Sjögren’s is a notorious mimic of MS. Xx
Do they describe you as “undifferentiated connective tissue disease?” Just shows you, they have to be prepared for systemic connective tissue disease to affect any part of the body. And we sometimes do not act like the textbooks!
Was looking for anything related to nausea after any food, drinking, eye tests and walking - as currently laid up again feeling car sick after walking dogs, eye test and a light lunch. I didn’t mention Sjögren’s in my search but this came up at bottom of first page. Thought of you. Xx
On your own nausea today, could it be related to the eye test. I always have a miserable time after an eye test with nausea and extreme photophobia.
It seems for me the visual field test triggers it ,and also when they look into the back of tour eye with extremely bright light, always a massive flare of everything, and also the headaches after it.
I was lucky today at opticians I just had a sight test as the hospital had done the other things last week.
Yes I do agree - particularly as they had to repeat the peripheral vision tests 3 times as I was seeing double - until I put my drops in and she found a viewing lense that worked. Then all was fine.
But the new optician said that my sight and glasses clearly haven’t changed and nor has the extent of my sicca, nor have plugs fallen out. Yes I do have the 3 types of eye disease of Sjögren’s he commented - but no corneal abrasions and nothing neurological affecting the optic nerve etc. As people here commented when I asked - photophobia is a symptom rather than a condition in itself.
So I’m back to wondering if Sjögren’s sicca gets too much of the blame for my symptoms from my various doctors. And I’m back to wondering about atrophic gastritis as, despite max GI meds and no sign of GERD - I do still have gastritis ie inflammation of the stomach lining with petechiae all over my stomach. Can it be dryness if my oesophogus is fine?
Have you had all B12, vit D etc checked properly I wonder as pernicious anaemia could cause anaemia, neuro symptoms including strokes and GI bleeds if it has been going on for ages ignored or untreated. Whisperit/ Mike commented about this recently as it can present atypically. Xx
Yes had B 12 injections for a year but reacted badly to whatever was in them and had a bad flare every time.
My B12 was a bit low then but I started using patches and now I use the under the tongue spray of B12 but to be honest it is still lowish though they declare “ normal”. I think I was about 220 last time.
Mind you I have a friend who had symptoms but her level was 380 so GP would not give the injections. She was losing balance and feeling very ill. Her family all died of strokes and all had pernicious anaemia, in those days they had to eat raw liver sandwiches!!!!
Anyway , she demanded to see a neuro and despite her “ normal” levels he put her on immediate injections due to her family history of strokes. We are now a year on and she is a lot better and still having regular injections.
I also take Vit D capsules from GP as was very low a few years ago, 29 I remember.
I have my six monthly visit to gastro pancreas woman at Glasgow Royal on Monday, so will be interesting what she says re the anaemia and recent strokes and also will mention the B12. Last time she arranged colonoscopy and endoscopy but both had to be cancelled due to the stroke. I guess she will reschedule them now before the planned azathioprine trial. I am back to Glasgow Royal Wed for Rheumy!!!
As he said last time, “ your life is just one big party of hospital appointments”——- but then there are also the opticians ,physios, dentists etc etc. Life was quieter when I worked with four kids at home too!!
Makes us feel normal on here with everyone struggling from one to the next!
Hope that headache is settling, miserable it returning ,but at least you know it did go away for a wee while, till it was triggered again. XX
You’re very classic MCAS in many ways Cutty - I mean your intolerances are even worse than mine! My B12 was twice top of normal 18 months ago but apparently serum test can be very unreliable.
I had even lower vit D than yours (26) so have been prescribed AdCal D3 ever since finding this out for myself 5 years ago. I’m thinking of getting myself tested privately for B12 different ways via MMA and homocysteine as there must be a cause for my chronic gastritis that isn’t the dryness as presumed. I don’t want to wait to have strokes in order to find out - your story is a leveller with all this seronegative = low risk tosh.
So hoping yours are done with now too. My Inverness dancing pal hasn’t had another since 2013 despite no aspirin or warfarin. XX
It is a matter, like you, of getting all the tests and waiting for the results of repeat auto-antibody tests. It is a big decision to be put on Warfarin so they are sorting through a lot with her. I think it is the nature of the beast. I really think you are both high priority patients. I think you will feel better asking your doctors if they could have picked up on the vasculitis sooner. Maybe not. They might not have caught your strokes. When and how often to do brain MRIs does not seem well-established with patients like us. It is all hard on you, I know. Feel free to message me at any point. K
This is all very reassuring Kim and thanks again for your help!
I have a history of gastric bleeds over many years, not so bad now they have increased my esomeprazole. But when I used to see my pancreas man at Glasgow Royal( great guy now retired) he used to be worried that every time he went down to treat the pancreas with scope or botox my stomach was full of blood. I now have a new woman gastro since last year who is excellent and very thorough.
I expect they will have to be sure I am not having any more bleeds before putting me on warfarin or similar!
As you say it is all very complex, and they did notice at last bloods done I was anaemic.They will want to know why I guess!
They have never said undifferentiated connective tissue but I expect they just dont know.
I will ask if they could have caught it earlier and I agree, I think MRIs should be done frequently with us as so many of our symptoms could be repeated strokes or TIAs. XX
Oh, well, then they really have to be careful with you! Know you are not being neglected. They are working, I know, to get all the information they need to make the best decision. Just such complicated stuff with serious implications. Your doctors have to know how upsetting this is. You have a lot of support here. They are probably past the diagnostic issues with you and focused on how your disease is manifesting. The name is just a box, and we don’t always fit into a box. No one knows this like a rheumatologist. K
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Hi, Apologies for the long post that follows, but I really need advice and support at the moment...
Vasculitis, Liver Cirrhosis, and Ascites
Any ideas on secondary vasculitis? Rashes? 
MRI examination of the brain results - can anyone shed any light? Bilateral tiny frontal white matter high signal could be due to migraine.
