I feel so angry as I was misdiagnosed

Hi have never posted before but I hope writing about how angry I feel will help .I suffered what I now know was a TIA on 23rd of July .It started with a tingling in my head and within seconds the tingle went down my right side and left me unable to feel anything I managed to drag myself upstairs where my husband and son where sleeping to get help and collapsed on the floor they managed to get e in the car as I only live 5 minutes away from the hospital and within 20 minutes of me collapsing I was in A&E. I was able to tell the receptionist I thought I had suffered a stroke and she told us to wait in the waiting room 3 hours later I was seen by a triage Dr they took my BP ect by this time I had started regaining function and it wasn’t till I nearly fell out the door he ordered a CT scan after waiting another 2 hours a stroke nurse shouted me in and told me they thought I had suffered with an hemiplegic migraine ,I told the nurse I had suffered them since I was a child but this was different and she then told me my cholesterol was high which I already knew as I have hereditary cholesterol she then took me down for a CT scan and after was told to wait in the waiting room about and hour after my scan the Dr shouted me through and told me they had determined it was a migraine and sent me home at around 3 am .By this time I had regained most of the feeling so had no cause to dispute the diagnosis so went home to bed, by 10 am the next morning I was completely paralyzed again down my right side. I thought at first I had suffered the same thing in my sleep but this time the paralysis didn’t go away I went to see my GP the next day and told him what they had told me he tried getting me to stand on my right foot and I collapsed he referred me for an MRI scan and neurologist ,within a couple of days I had heard the scan was booked for the following Saturday 1 week after my nightmare began .after going for the scan I waited another 2 weeks for the results when I saw the Dr he was reading the scan results out not realizing as working in Care for 30 years I knew what he was saying until I asked him straight out if I had suffered a stroke he told me he was sending the scan to the neurologist for official diagnosis to see how they wanted to treat me and started me on statins and BP meds and sent me home with a BP machine to monitor my BP for a week, during the next week I had back to back migraines. From day 1 I had had been doing my own rehab but for the first 5 weeks I seemed to have little to no progress then something in my head clicked and I’ve made steady progress on my own until 2 weeks ago my progress seems to have hit a bump I mentioned it to the Gp and told him I was getting frustrated because I hadn’t had any contact from the neurologist or stroke clinic the Dr told me then that it had been confirmed by the neurologist I had suffered multiple TIAs and a stroke he doubled the dose of Bp meds and a blood thinner said he would refer me to MY Therapy . The therapy team rang me within the hour of getting home and made a appointment to come to my home the following Wednesday ,I have had the therapy team 3 times since then my recovery seems to have stalled I am still numb in my face and hand ,my balance is rubbish I’ve had numerous falls ,my swallowing is still affected and I have developed a tremor in my right arm .Last Sunday like a wave hitting me I started to cry buckets I feel so emotional all the time now and cry at the drop of an hat the OT that came out on Wednesday has referred me for neuro therapy I feel so let down by the hospital and will be putting in a formal complaint when I feel up to it .So sorry for the ramble but although I’ve got tears rolling down my face as I write this it feels good to get it all out as I don’t want my family to be burdened with how I truly feel ,fatigue and not sleeping is also a major factor in how I feel too as I am exhausted all the time .Thanks so much for allowing me to just get all this out of my system Dawn

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Hi @Dawn55

Dawn,

Wow wow wow that’s bloody hard!!!

I’m so impressed with you for getting through that

And you made me cry too for the second time today after West Ham lost :disappointed_relieved:

Firstly you are amazing and this is a bloomin kick in the teeth and another few in other areas clearly :roll_eyes: :disappointed_relieved: :exploding_head:

Then secondly welcome to a free membership club that you didn’t want to join but now you have it may be some comfort!!

You have been through A LOT

BUT

YOU ARE NOT ALONE

The first few weeks / months are going to be a proper fog I’m afraid. I don;t know what you are experiencing but I’m feeling your frustration and pain.

If you feel like it have a look at this!

Welcome - what we wish we’d heard at the start Community

Hello - You are no longer alone hugs

← click the triangle for a warmer welcome

So sorry you’re on this journey. I am 11 months in from various stroke events and it is hard for my friends and family and me!!. but there are good and bad days!

Keep talking to us please and let us know if you need any more support

Kieran :polar_bear: :wink:

Oh and here is a picture of a polar bear family just for you!!

Polar Bear Family Portraits | Molescroft Primary School

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Hi @Dawn55 welcome to the club nobody really wants to join but we are happy that you’ve found us. But now you are here I hope we can help support you in your recovery :smile:

Unfortunately not all strokes follow the F.A.S.T. rules as you see in all the adverts. They can be crafty, sneaky little blighters and this is partly due to how they present themselves in the first place. There are silent strokes which have no noticeable symptoms and they can also mimic other conditions. And TIA’s can only be detected on an MRI if you have the scan soon after the event…otherwise they disappear without trace. Stroke mimics and functional stroke | Stroke Association Is it really any wonder they can be misdiagnosed.

I’ve no doubt you are going to be learning a lot about strokes like the rest of us on have :smile:

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Happened to me then I had (just a few) some more! Then the MRI the next day to quote fault in our stars @ashleyhk38 lit up like a Christmas tree :person_shrugging: :roll_eyes: :disappointed_relieved: :exploding_head: :polar_bear: :polar_bear: :polar_bear: :polar_bear: :polar_bear: :polar_bear:

Keep strong like a polar bear

K :polar_bear: :wink:

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Hi @Dawn55
Welcome to the forum and so sorry you’re here.
You’ve been through the mill and no surprise you have the feelings that you do.
It’s great though that you managed to write your thoughts down.

From my experience, recovery is variable and sometimes I feel like I’m going backwards.
I was advised to keep a symptom diary and now even when things aren’t going well I can look back and see the progress I have made.

It’s good you have a family around you.
I wish I had talked to mine about how I was feeling earlier as it would (perhaps) have saved some difficulties later down the line.

I hope you’re starting to feel better really soon

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You need to rant and it sounds horrific and so scary for you too!and do young to be suffering like that I was fortunate with my medical team they looked after me very well thankfully and my daughter saved my life getting round my house within ten mins and ambulance crew within the hour! Hence why I’m getting on better I believe and having been a carer like you for 44years had helped me too sorry for you

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Hi @Dawn55,
Welcome to the site, its a great place to vent and get advice. Sorry to hear what you have gone through. Its not nice getting misdiagnosed, I had my stroke in May, they took me into thinking I was having a seizure, the CT scan didn’t show a stroke. they let me out that night. Next day I was blue lighted back into hospital, had another CT nothing was shown, they then thought I had damaged my retentors due to my head pain, spent the night in hospital, where the next day they did a lumber punch as they thought I had meningitis going into my brain, nothing was found. the next day I had a MIR when they found I had a clot and a minor bleed after it.
Dawn, you are right, as per you I did feel angry as well but being 49 fit non smoker low alcohol, I didn’t tick any of the boxes, unfortunately, they can only treat what they can see. I keep looking at it, is I am still here but in a bit of a different form, if this all happened an hour later I would have been diving on the M25 with a different outcome.
Please don’t think you are a burden, that’s a common thing that I guess all of us think about ourselves, Accept the help that people offer and don’t be afraid to ask for help.
Rest is the key element to recovery and getting to understand the new you, 5 months on and I will still go to bed in the afternoon when my fatigue kicks, don’t feel guilty to listen to your body when it needs a rest. Sleep is funny I sometime just wake up at funny times and that’s it I’m awake for the rest of the night or early morning. Unfortunately recovery if a slow process and rest is the key, your emotions will be different now. I can watch a cartoon and start welling up now days, I think I’ve gone soft lol.
What I will say is that you have joined the right group here, I’m sure people on here will give you great advice and make you see you are not alone.
good luck in your recovery and stay positive hun.
Dave :grinning:

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I hope writing things down did help you. Everyone needs to vent, and now you know that you will get loads of emotional help, and practical advice.
My husband is the stoke victim, and now every post here makes me cry for the new sufferers but pleased that they’ve arrived here.
Anger at a situation can eat you up or it can make you fight back. With family by your side will help you fight.
Keep going.
Shelbo

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Thank you everyone I do feel better I have left a lot of things out about what has happened in the last few months but I will in time be able to write it all down . I actually had 3 hours unbroken sleep last night for the first time in months .Thanks again Dawn

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@Dawn55 hi & welcome to the forum. I’m.not surprised you are angry as you certainly seem to have been given the run around. It is very difficult when CT scans don’t show anything up. There are a number of people on the forum who went through similar.

Hopefully, you are now receiving all the correct treatment & will start to progress along the recovery path.

This is a great place to rant & come for advice & i hope you find it helpful & supportive too.

Sending you my very best wishes.

Ann x

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Hi. I had a similar experience to you. I had a TIA (I hadn’t a clue what a TIA was) at the age of 55. My husband took me to hospital and because I had previously suffered migraines, they thought it was that. I had a CT scan, which showed nothing, but they kept me in overnight. I had a stroke the next morning. I often wonder if the outcome would have been different if I’d had the MRI the night before…

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Hi Minnie yes very similar to me but they didn’t keep me in hospital if they had when I had the stroke a few hours after it would have been caught, I still haven’t seen the neurologist or been to the stroke clinic however the physio has given me some leaflets with excercises to do. I seem to have hit a wall now in my recovery. I hope you have been treated a lot better than I have been .

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Shwmae Dawn, it’s not uncommon, I have learned, to be misdiagnosed. I too was misdiagnosed after three months of six TIAs and then a bilateral stroke. The impression I got from my stroke consultant is that an MRI seems to be the most expensive machine in the hospital. It’s the machine that goes “ping”. So, any opportunity to avoid using it, seems to be part of balancing a budget rather than anything else.

There were many people I initially felt resentment towards … the GP who turned me away three times with a diagnosis of BPPV, the paramedics who asked me if I wanted to go to hospital or go to bed and sleep it off, the doctor at the hospital who gave me an Epley manoeuvre when I arrived at A&E … but after time I realised that I needed to be part of the reversal of this ongoing deficiency. Despite Hippocrates having used the term apoplexy to describe stroke-like conditions, and it being associated with stroke since the middle-ages, it appears that the potential symptoms of it can still evade the broader medical community, or it has been buried beneath a pyramid of other conditions. What I have also discovered is that, out the other end, some people can be startlingly mindless about the repercussions of stroke for the survivor.

Now is the time for you to take care and be as kind to yourself as you possibly can. :grinning:

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Oh my God! Not good! A rant is definitely reasonable. I do get - the FAST don’t apply to all. I think you definitely need to complain, if only to let it all out and hope it will mean they won’t do to the next person. Probably will though. Swallowing - go to directly speech therapy (weirldy) You can refer yourself. They definitely help. Get a PIP (help benefit, not they test) and through a charity. Like Possibility People, maybe. Emotions! Fatigue! Don’t start. I only just found this forum. It is looking like it will hlep a lot. If only to not feel alone and people who do understnand. But your story - well, should be unbelievable. Do take care. Carrie

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