Back to the beginning

Hi guys

It’s been a year and a half since my stroke and I was quite pleased with where I was in my recovery journey. I was working again, doing tai chi one evening a week and taking a pilates class once a week aswell. I went out one day at the end of October and had a dizzy spell which didn’t last long and didn’t seem too severe. However in the days that followed I felt my post stroke symptoms return. I went to my GP who told me in no uncertain terms that the dizzy spell was nothing more than a return of my vertigo (I’m still convinced this was a misdiagnosis which led to my stroke). After quite some urging she did refer me to the Neurovascular Clinic and I eventually got an appointment on 21 Dec. The consultant suspects that my dizzy spell was a TIA and has sent me for an MRI and I am to have a heart monitor for 72 hours. In the meantime I’m suffering from severe sensory overwhelm, fatigue and I’m terrified. I moved house this year meaning I don’t have the medical support I had before. Something seems to have gone wrong with the transfer of my notes from England to Scotland leaving me having to explain and re-explain my medical history

I really feel like my recovery is back at day one!

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@Alis so sorry to hear this. I really don’t understand why in this day & age people’s medical records can’t be accessed at the touch of a button.

I really hope you didn’t have a TIA. Hopefully the MRI will help with a diagnoses so you can get the right treatment.

I had some severe, prolonged dizziness at end of Nov & I got fobbed off by stroke consultant. I am going to discuss with my GP though as there has to be a reason for it.

Try not to worry too much as this can make your symptoms worse. Easy for me to say I know.

Hope you bounce back quickly.

Best wishes.

Ann xx

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Thanks! I hope your discussion with your GP goes well X

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@Alis i agree with @Mrs5K try not to worry. I had a funny turn and a foggy head last week which took me by surprise. As it’s 2 years this March for me.

The MRI will certainly clarify yes or no so that way you will get some closure one way or other.

Good luck and I hope it’s not what you think it is. Kind wishes loraine

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Hi
Where about are you in Scotland? I’m under milothian & they don’t impress me but I hear good things about Edinburgh & Glasgow
I’ve found that the notes don’t give them a decent understanding and when there’s a lot they aren’t read with care so I always give context

How’s your impacts now a few days have passed?

Hi

I am in South Ayrshire. The issue with my notes seems to be that I had my stroke while living in England and the notes have been emailed and uploaded into the Scottish NHS system but in no specific order so nothing is easy to find. I’ve contacted my old GP practise and they have sent me my post stroke scan results so, at least, no doctor can tell me they haven’t been able to read them.

I’ve been getting progressively worse since November and am still waiting for the results of my MRI scan and am currently wearing a heart monitor for 72 hours so at least my symptoms seem to be taken seriously. It was quite a journey to get this far!

I honestly never expected, as a stroke survivor, to sit in a GP’s office and be told that what I was suffering was vertigo again!

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the label “Dr” doesn’t guarentee that knowldege to recognise ambigious symtops requires a discriminatin process rather than leaping to a bias of prediposition for a cause
i realise now that i probably had severl TIA that all the gps in our local practice failed to recognise. When i had mri they found evidence of several events in the past

im firmly of the belief that we as a community of #StrokeWarriors have a more holistic comprehension without formal trainig. its sometimes called the wisdom of crowds. This & the DS et.al community create it - hence one of the potential sources of value here

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@Alis I totally get this as I was told I had vertigo 6 months after my stroke. It was pretty frightening and we had another trip to our dreaded hospital. I felt the hospital couldn’t be bothered but then again I was misdiagnosed by a migraine, which I was a sufferer so I knew what it felt like. Then diagnosed 25 days later with cerebellar stroke, I reassured the doctors it wasn’t migraine but they had to be insistent. Kind wishes Loraine

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I live in Tayside and have found the medical professionals absolutely brilliant, three communicate fairly well. My biggest hurdle just now is my AFO which really hurts my foot which in turn affects my walking. I’m just about to enter year 2 and want to progress my mobility, my phydsio is going to vcome to my next orthotic appointment to give me back up about the splint. Hope I’ll get this resolved and crack on with year 2 Any tips for getting arm moving, I have left side weakness and am right handed. I think rehab varies between clinicians. I’m keen to work at home but don’t know where to start any advice would be great.
Toots bee

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There should be on line course and I think there’s some in here the stroke forum too. @triciabaynes good luck someone might be better at sharing the info for you :blush:

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there are online courses and resources galore :slight_smile: and
there should deffo should be in community too see https/bit.ly/StrokePeerSupport for my thoughts.
@Loshy d’you want to joins at 1300? i posted link y’day then Nicola@SA has a 14:00 “lets talk” too

Hi @SimonInEdinburgh no thank you but thanks for asking me . Enjoy :wink:

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another week p’haps…

No it’s not for me sorry. I do like joining @Bobbi zoom meetings so I’m comfortable with that thanks

Hi @Alis I’m another one that was told I had vertigo, diagnosed over the phone though as it was during the covid times. Good to hear they are taking you seriously and checking you over, hope everything turns out ok and you get back on the road to recovery.
I’m in North Ayrshire I found the hospital and rehab unit fantastic, I changed my GP, it was really my consultant who contacted another gp in the same surgery about my meds and It went from there. As said above you would think With everything on computers it would be easy to read notes even if it is a different country!

Best Wishes

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@Sharon_B ,

Thanks for your reply! Do you mind me asking where your consultant was based?

The one I have been referred to is based in Crosshouse Hospital and I did quite like him. My issue is that I am currently in limbo waiting for test results!

@Alis My consultant was Dr Gnosh at Crosshouse he certainly knows his stuff and in my case really pushed to get me out of the ward and into the rehab unit even when the nurses told him several times it was full, he snapped back “find space this patient is young and needs to be up and moving not in a bed all day” I was a bit scared of him to begin with but he was right :smiley there was another Stroke consultant can’t remember his name but I heard he was also very good, I thought the whole team at crosshouse were excellent, hopefully you will also get good treatment and answers quickly with them

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I have Dr Ravendra so fingers crossed I get the results soon!