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Hi, I received my MRI results last week when in A&E due to spinal cord compression.

The a&e doctor dropped into the conversation that my MRI showed two small strokes which I know occurred over the last couple of months. It also showed probable CAA and a couple of dozen microbleeds and the subsequent lesions.

I waited five months for the MRI and am on a waiting list to see a neurologist ‘before Christmas 2026’ the delay was due to the GP insisting it was all in my head and was FND so he did not need to refer me to the neuro if I would agree with him. I refused to agree with him and hence the wait.

It was all in my head but not in the way he expected. I was also told when in a&e that my notes say in multiple places that I have heamophilia. I was told this when I was a teenager (I am now 59) and then verbally told I was not. I ended up in hospital during covid due to a nosebleed that took about 6 hours to stop and left me on a drip and apparently there are three places in my notes saying I am a heamophiliac. I therefore refused to take or consider blood thinners until this is resolved.

At the moment I am trying to work from home but have a number of ongoing issues such as fatigue, eyesight and multiple neurological issues with speach, balance, memory etc.

My job means i spend all day on a computer.

I told my health situation to my employer and my managers response was ‘does this mean you are leaving?’

I feel shit and have booked a private appointment with a neurologist just to try to get some straight answers rather than wait to see an nhs neuro some time this year.

My wife now goes to gp appointments with me since they have become contentious.

I know there is no magic cure to any of this and I have got my blood pressure down to approx 110/70. My weight is going down. I have never smoked and cut out moderate alcohol a couple of months back. My diet is and has always been fine. I am on statins as well. Just feel i am hanging around waiting for a third stroke.

And the spinal problem? No surgery due to the risk and now on codeine and looking at quarterly injections in my spine. Need to book the physio as well.

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Hi @waylands and welcome to the community. Sorry to hear you’ve had reason to join but we are a friendly bunch and someone is always happy to offer advice and support so please ask away if you have any questions.
As I understand it a GP is not able to diagnose FND and anyway it should only be diagnosed when you have been checked over properly. In this instance it seems your GP got it wrong and it’s good that you pursued getting an MRI. Hopefully now you have referrals in to see the right people to get you sorted out. I would imagine there is a simple test to check whether you have haemophilia or not and like you say you don’t want to risk blood thinners until you know for sure.

In relation to your work is sounds like you need to take some time off sick to rest and recuperate properly. I was off for 18 months after my stroke and went back part time working from home. It was still exhausting 18 months on so I’m not surprised you’re finding it tough. As for your manager asking if you are leaving………..well what can I say. I hope you told them no. Your manager will need to follow the absence processes that are in place if you go off work. I don’t know who you work for but it may be worth you speaking with ACAS so you know your rights.

Well done on getting your BP down and also your weight. You are doing all you can at the moment so please don’t stress about having another stroke.

Best wishes.

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Were the strokes ischaemic or haemorrhagic?

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Hi, they were heamorraghic (sorry for the typos)

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Hi, Mrs5K,

Thank you for your response. Yes he should not have mentioned FND, hence the tension with the GPs at the moment.

The Heamophillia was first mentioned when i had heart surgery for congenital heart defects in the late 1970s. The surgery was cancelled the night before due to unstable clotting (factor 13). It was not treated and i carried on life until i had some bleeding issues and got retested and told i did not have factor 13 heamophilia. What i discovered in a&e was that there were notes on my record re factor 8. The text below is what my other gp sent to haematology last week

'dear dr , thank you for your advice re this 59yr old man as regards to initiating clopidogrel. The patient has a summary entry 1998 congenital factor VIII defiency also there is a letter in communications and letters dated 17/5/12 from haematology . The patient has had significant epistaxis 25/1/21 see discharge letter in communications and letters . Please also see recent mri head 7/6/26 on ice detailing microbleeds and 2 chronic infarcts . In view of the above history please advise on starting clopidogrel as recommended by stroke unit ,the patient has not as of yet started clopidogrel due to above concerns -

Work wise I didn’t know if my manager meant it as she would be stuck if I left or she would prefer me to leave. I have mentioned that she or my line manager should involve hr but they are both deaf on the issue.

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It does sound like you have some further probing and prodding to do then, haemophilia is quite rare I am to understand and haemorrhagic stroke is rarer than ischaemic stroke. They shouldn’t prescribe anticoagulant medication if you had bleeds. Wouldn’t the first step to be asking for a haematologist referral? What, may I ask, is your aim in seeing a neurologist?

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Hi, the original aim in seeing a neuro was because I had had quite a lot of neurological problems. It is only because the mri finally got completed and reported on that it changed anything. The GP whenever I ask anything says speak to the neuro.

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If you don’t mind me asking, what kind of neurological problems have you been having?

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Mainly triggered by fatigue but included:

Main one is absolute chronic fatigue

Repetitive and multi times daily, headaches in the same place and numbness and tingling on left side of head and face. A mix between when you have been given an injection at the dentist and chewing on an electric toothbrush which is vibrating at speed.

Trying to pick things up like water bottles with my hand and then feeling them fall straight out of my grip with no sensation of holding them at all.

Not being able to feel my dog pulling on a lead or feeling i am holding the lead when he pulls (German Shepherd)

Unable to stand with my eyes closed without falling over.

Not able to walk in a straight line toe to heel without falling over, nor stand on heels or toes etc

Keeping my head still and following a pencil with my eyes, results in my right eye going walkabout and moving in a opposite direction to my left. Also results in my right eye having a different blink rate to the left when I am tired.

Right leg buckling and tripping over my right foot when walking. Very clumsy

Hitting myself in the face when trying to touch a finger and then touch my nose

So fatigued I loose my voice and blank out and forget words for things. Forget names, faces, day of week, dates etc

Silly things like topping up my coffee in my cup with tea even though I can see the coffee pot in front of me.

Trying to make coffee by putting the ground coffee in the cup and filling the cafetiere with water.

Total melt down outside sainsbury because I dont want the next trolley in the chained up trolleys, I want the third one from the end even though it is identical. I put my pound coin in to get the third trolley and then spend a couple of minutes trying to get the other two trolleys it is attached to, off it, so I can use the trolley i want.

Two weeks ago running a bath. I know the water from the tap is scalding, I know what tap supplies the hot water, but I still put my hand under the running water to make sure it is hot and i am not wrong, and then spend the next 10 minutes with it in a sink of cold water trying to reduce the damage.

Sat in the car yesterday speaking to my wife and trying to think of the word ‘watering can’ i could see it in my mind but all I could think of was ‘saucepan’ and new it was wrong, after about 30 seconds I gave up.

There is more but that gives a gist of it and it all happens if I am fatigued.

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I agree, as per above, the gp has sent a note to haematology asking for clarification.

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That seems to be the way of post stroke neurological fatigue, conditions get worse when the brain runs out of battery. My symptoms become far more acute when fatigued. Neuro fatigue is interesting because even the slightest damage can cause the whole system to drain as the brain pushes harder for even the most simple process. My partner had a silent stroke seven years ago, no apparent symptom but fatigue. So she has some cognitive function that she is not overly aware of that is zapping the battery life out of the brain.

You have a good list there to take to the neurologist, it may prove useful or the neurologist might just say that that is life after stroke.

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Yes, and too be honest it would be fine if its a case of ‘that’s life’ and my focus has to be on what I can do, rather than what can medicine do and in a lot of ways I prefer that and being in control, however limited that control is.

As an aside, I notice that you mentioned Brecon elsewhere on this site. I was in Brecon at the beginning of June. We spent a couple of days in Hay on Wye and dropped down through Brecon for a few hours on the way to visit family in Monmouth. I spent many a weekend around Brecon and at Cwrt-y-Gollen camp near Crickhowell when I was younger (and fitter)

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Aye, my uncle was in Brecon and my cousins and aunty live there. I’m more West. Near Carmarthen way.

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I bounced along the M4 and back again. School in Cardiff, college and Territorial Army in Bridgend. Mature student Trinity College at Carmarthern and then Swansea. Back along the M4 to Chepstow, up to Monmouth and across to Yorkshire for a change.

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Hi @Waylands

Welcome to the community, I’m sorry you’ve had to join. It sounds like you’ve been through a lot and there has been some mistakes made my your GP.

It looks like you’ve had some helpful responses here and I hope you’ll find this community helpful as you navigate through this time.

If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

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