i had trouble with my left foot a few years ago,tripping,the foot dragging and trouble going up and down stairs,i had a mri and was told it was foot drop/drop foot which may have neen caused by a small stroke that doesnt show up on an mri,nothing was done by the neurologist or my dr after this.for months i have been losing my balance,bumping into things mt walking has got worse and i need a elbow crutch to walk. i saw a specialist for tests on my leg and he said i walked like i’d had a stroke and advised me to ask my dr for an mri,this i did and i got the results of my mri and i had a mini stroke,ischaemic stoke where a clot blocks blood to the brain,they got me on blood thinners,statins,blood pressure tabs. but that is all i have been given,no advice etc. i am very weak on the left side,cant raise my arms to reach up as they tire fast.exhausted all the time,sleepy,headaches,nausea,cant walk far,over active bladder has got worse(not sure if this started after the first mini stroke)i think the strokes were around 8 years apart but my memory isnt too good,i forget words when talking about things,i’m not sure what to do now,as no one seems to tell me anything i had to ask 4 times before it was explained what kind of stroke i’d had but no follow ups i’m 61 and in bristol. thank you
Hi @Susanh1 and welcome to the forum. It’s unfortunate not all strokes present themselves in the way all the publicity presents them unfortunately. And sadly doctors don’t tend to want to give away much when it comes to what happens next, probably because it’s so wide and varied.
I would have thought the stroke clinic would have been in touch by now, they’re the ones who would assess what assistance you would need in the way of physio/OT etc. Get your GP to chase that up and while they’re at it they could also refer you for stroke physio and the Falls clinic for a risk assessment.
But this also might be a useful place start yourself:
Make a referral | Bristol After Stroke.
If youread through the back posts from other people You’ll find what you described is common and normal results of strokes, the journeys that others have had after having their strokes - which is generally improved over the course of a year or two and hopefully they will give you some comfort
feel free to ask about specifics, have a rant when you need to if you need to, celebrate your wins etc ad nauseum
There’s a lot of empathy and freely shared knowledge here
Yeah emeraldeyes and one of the biggest blockers is that the stroke association refuses to update FAST to befast or faster to incorporate balance eyes reactions . I’ve tried to lobby them several times. at least they changed their web page after I commented that it was far from complete based on current research
That research concluded that about 14% of stroke warriors didn’t present the fast symptom but anecdotally I think we see on this forum and on different strokes and the other forums around that maybe it’s more like 25 or 30%. of course it could be that we have more stories from thise don’t present and the people who do present with fast don’t bother commenting…
Fast was a great step forwards in awareness but the time arrived long ago when it needed updating
@Susanh1 welcome to the forum although sorry you’ve had cause to join us.
Everything you describe is common after a stroke & it takes time to improve. It’s not good that you haven’t had an indication on what happens next. You should go back to your GP & push for them to get you an appointment with the stroke team.
You could also ring the Stroke Association helpline for advice on what to do next.
0303 3033 100
thank you,will try to ask my dr about the stroke clinic.
thank you will try to see my dr and explain how i am feeling etc
thank you am going to look at back posts etc see what i can find out.
thank you i will see if my dr will refer me to a stroke team etc
thank you,so many of you being helpful
It would probably be quicker if you just referred yourself. You look it up online for your local stroke team, you don’t actually need to go through your GP.
THIS!! S.T.R.O.K.E. was better but I guess harder to remember? I can’t remember now what those were for…I tried to look it up again but keep getting FAST and now BEFAST which I never heard of. But for visionaries
PS I think you all might call 999? And I only had a headache at first and felt disoriented but didn’t know what to call that feeling or what a headache was. I called and said I felt odd. Anyone who knows me, knows that it my usual!
oh thank you i thought it had to go through a dr,i’ll try tomorrow
i didnt realise i’d had a stroke,i have had severe migraines since i was 13 and what i thought was just a bad migraine must have been the stroke. thank you for the info.
Hi , I am also left to my own devices. I didn’t know that I had had a stroke until 9 months after I had been to the hospital. I had been out by myself shopping when I was unable to walk and had the most terrible headache. My husband took me to the doctor who said that I had had a stroke and needed to go straight to the hospital.
The hospital doctor said that I was suffering from vertigo! Sent me home. 5 months later I was still unable to walk properly and headaches galore.
Doctor arranged for me to see a neurologist 4 months later.
This is when I was told that I had had a stroke at the back of my head.
I am still waiting for an appointment with a cardiologist as the 2 week heart monitor I had been using showed many irregularities.
I was supposed to hear from the stroke team but as yet nothing.
Perhaps it’s the same for everyone in this part of the country as like yourself, I am in Bristol
@15Velvet just wanted to say hi & welcome you to the forum.
Sorry you had to wait so long for your stroke to be correctly diagnosed. It does seem to be a postcode lottery at times.
Hope you are now getting the help you need & that your recovery is going well.
Welcome to the forum which is the manifestation of the one of the best clubs in town for people in our situation .
You’ll find here lots of advice, compassion, willingness to listen, true understanding that you won’t find in the medical profession and elsewhere .
Your story does sound as if it reflects incompetence on some services part. If you go to the UK ABIs website that’s the acquired brain injury forums
you’ll find a list of solicitors that they have on the books have understanding of acquired brain injury legal challenges. Of course the decision to go that route is a major one, consuming a major amount of energy just at the time you probably need to be focusing that on your recovery and therefore may not have the bandwidth for anything else. But as you’ve laid out your story it does sound to me as a completely ignorant layman as if incompetence was present - although you haven’t laid out whether the timing of the treatment you got has compromised your quality of life going forwards.
Whatever the omitted details welcome and you will find support here
yep i was told i’d had a stroke over the phone after asking for the m r i because of my walking problems etc i was given statins and blood thinners and thats it,never actually seen any dr. have written to mine explaining i dont know anything about strokes,if they can maybe refer me to someone who can explain what happened,how to get any help etc. i’ve had to buy my own crutch to be able to walk any distance a foot drop brace to stop my foot going outwards. all the dr and nurses strikes and covid have really messed things up appointment wise(not that i blame the nurses for wanting a proper pay for the work they do)but any kind of stroke should be looked into as quickly as possible as they can lead to a full blown stroke. maybe bristol is slower but people shouldnt be just told "you’ve had a stroke,heres some meds " and thats it,maybe my dr will help after he gets my letter but not holding my breath. been given advice to go to bristol stroke team and you can make a referral yourself instead of waiting for a dr to do it,maybe this might help you? [Make a referral | Bristol After Stroke](https://www.bristolafterstroke.org.uk. i really hope you can get things sorted out.take care.
Personally I think that is the quickest way forward for anyone who’s had a stroke and not received any kind of aftercare and been left in the dark to wing it themselves. Apart from anything else, you cut out the middle man, namely your gp!
It would certainly be quicker than making an appointment to see your gp or writing to ask to be referred; then gp having to contact stroke team (or turn you down), wait who knows how long for them to respond to gp, and you waiting who knows how long for gp and/or stroke team to contact you back. That could take weeks, months depending.