AIBU to warn you NOT TO ASSUME LONG COVID

[FixTheBeak]

DONT ASSUME IT’S LONG COVID

My mum had what we thought was long Covid. We looked after her and took her to appointments etc . As a family we are well informed, articulate and proactive so quick on managing symptoms and and getting appropriate medical help.

Her consultant thought she probably had cancer of the bowel or Polymalgia RHEUMATICA and she underwent scans etc - so far all clear. Bowel and bladder cancer referrals were put in at this time.

Eventually her energy levels were soo poor that we had to have her admitted to hospital for tests and to manage severe anaemia. While there she had episodes of tunnel vision which they hospital were completely uninterested in. I ended up calling an optician for advice as I didn’t understand why they were not fussed. In fact one of the consultants recommended that my mum go and see an optician when she got out.

DO NOT IGNORE VISION DISTURBANCES

DO NOT LET THEM FOB YOU OFF

My mum lost the vision in her eye a few days later and she is completely devastated.

it turned out she has a disease called GIANT CELL ARTERITIS which means steroids indefinitely. It is a medical emergency. I am putting the symptoms
at the bottom if this post because I had never heard of it before. To be fair she didn’t have any of the symptoms really so I understand why it wasn’t diagnosed on time. But I will never forgive them for ignoring episodes of tunnel vision - her eyesight could easily have been saved.

ADVOCATE FOR YOUR PARENTS BECAUSE THEY ARE REALLY VULNERABLE TO BEING FOBBED OFF

BE AGGRESSIVE ABOUT MANAGING SYMPTOMS

CHECK THAT ANY REFERRAL HAS BEEN PUT IN - my mums bowel cancer referral was delayed by two weeks because of incompetence

SYMPTOMS DONT ALWAYS FIT exactly - my mums only symptom was tunnel vision.

PLEASE PLEASE DONT ASSUME ITS LONG COVID

SYMPTOMS OF GIANT CELL ARTERITIS

(Inflamed temporal arteries)

The most common symptoms of giant cell arteritis are head pain and tenderness — often severe — that usually affects both temples. Head pain can progressively worsen, come and go, or subside temporarily.

Generally, signs and symptoms of giant cell arteritis include:

Persistent, severe head pain, usually in your temple area
Scalp tenderness
Jaw pain when you chew or open your mouth wide
Fever
Fatigue
Unintended weight loss
Vision loss or double vision, particularly in people who also have jaw pain
Sudden, permanent loss of vision in one eye
Pain and stiffness in the neck, shoulders or hips are common symptoms of a related disorder, polymyalgia rheumatica. About 50 percent of people with giant cell arteritis also have polymyalgia rheumatica.

When to see a doctor

If you develop a new, persistent headache or any of the signs and symptoms listed above, see your doctor without delay. If you're diagnosed with giant cell arteritis, starting treatment as soon as possible can usually help prevent vision loss.

THANKS FOR READING

How long did she have tunnel vision for?

I'm sorry to hear this, FixTheBeak.

Unfortunately, our healthcare services are so under staffed and under so overwhelmed that health care professionals don't get the opportunity to thoroughly investigate every sympton and perform every test they should no matter how well informed, articulate and proactive a family are. Health care professionals are forced to prioritise and sometimes get it wrong.

The above isn't meant in any way to excuse or justify what happened to your mum.

Two days and they did nothing. She was an inpatient at the time and we told everybody we spoke to and nobody was bothered

it seemed to resolve itself for the next two days and we took her home.

Then she woke up blind in one eye. So over a week in total. Avoidable with big steroids. Also with decent caring doctors who don’t just treat their wards as holding bays for deterioration.

I'm sorry to hear this, FixTheBeak.

Unfortunately, our healthcare services are so under staffed and so overwhelmed that health care professionals don't get the opportunity to thoroughly investigate every symptom and perform every test they should, no matter how well informed, articulate and proactive a family are. Health care professionals are forced to prioritise and sometimes get it wrong.

The above isn't meant in any way to excuse or justify what happened to your mum.

I have a different type of vasculitis that was not picked up on my first visit to a and e - join the fb vasculitis group, they are a bit earth of information and also the vasculitis uk website and helpline is invaluable

I know but Tunnel Vision is also a sign of stroke which I had to point out to them because the nurse literally said “I don’t know what tunnel vision would mean” and I said : it’s a sign of stroke. Did you not know that?

I then complained to the consultant that the nurses don’t know the sign of stroke on a geriatric ward which she took on board.

and my point about saying we are proactive etc is not boasting at all: it’s absolutely frightening - that the heck happens to those without any family members or who have dementia or don’t have the confidence to ask questions? My mum is far too unwell to advocate for herself.

Thank you. She is totally devastated. Hope you’re managing your condition ok

This is so important. We cannot let "long covid" just become the default diagnosis and end up missing serious illnesses until its too late.

It's important she sees someone one who is familiar with her condition - I don't know a lot about that type of vasculitis but from mine you need to push ( a lot) it's probable that most drs she sees will not have ever seen someone with her condition. It normally falls under rheumatology but she will need multi disciplines to have input.

I suspect mine was caused by covid but it was prior to mass testing. I've just weaned off steroids but had iv chemo and will be on chemo tablets for a total of 5 years.

Im so sorry this has happened - it's a huge shock, I'd never heard of it either.

I know no one likes to but please complain again about the lack of knowledge - tunnel vision in strokes, and the rest, it’s not to blame but info is needed to show that they are understaffed. Complaints can be used by governance as evidence of understaffing.

Please don’t think that the staff working in the wards are not complaining or don’t care, lots of places are under resourced and burnt out.

Managers will not help us without evidence. Complain as high as you can/PALS/patient complaints.

So sorry to hear about your mum.

Yes, sadly it's an autoimmune disease and does need steroid treatment (which will have knock-on effects). There's a good community over on HealthUnlocked, perhaps you and your mother could join there. :)

So sorry about your Mum. I totally endorse your OP, we had the same with our beautiful Mum who was fobbed off again and again with visual disturbances, being told she had vertigo. One of her GPs actually became palpably irritated by her going back to him a second time because of them.

She turned out to have a brain cancer which killed her.

Her treatment by the NHS pre-diagnosis was unforgivable and we only found out there was something serious going on because a close relative has a senior position in the local hospital and insisted she was scanned.

I’m so sorry for your poor mum.

Sadly, this kind of thing is common in the NHS. If you have a condition that’s common and well-known you may get reasonable attention (though treatment may well be too little too late/the cheaper/outdated version).

But if you have something a bit more unusual, heaven help you. Nobody will think outside the box or often even outside their own silo. You’ll just be pushed down a pre-existing treatment path and only be given tests for that.

If after the first level tests there’s no answer yet, you’re quite likely to be labelled with having anxiety or long covid. Nobody will consider that any anxiety you display could be resulting from being ill and not having a diagnosis/treatment/ being taken seriously. You can tell them over and over that the anxiety came after the physical symptoms, but this will be ignored.

If you’re lucky, at some point you may get in front of an experienced consultant who still has some curiosity and doesn’t have their entire ego balanced on being right all the time and they may join the dots and get you on the right track. However, this could literally be years after you first started. If you’re still alive at that point.

I pray that if ever I get sick it’s with something common.

ReedRite, I absolutely agee with you that many in the NHS cannot think outside the box or often even outside their own silo.

However, the reason for this is mainly due to the caseload and work pressure. The NHS is severly understaffed and the only way they can manage the workload is by not thinking outside the box and dealing with patients as quickly as possible.

An experienced consultant who isn't overworked and still has the time to maintain some curiosity will be able get to the bottom of less common illnesses.
However, those who are very overworked have to come up with a best odds scenario due to shortage of time and hope that they are right.

@FixTheBeak I'm so sorry for your poor mum, & understand your fury. :-(

I know someone who's 'long covid' is actually terminal lung cancer. It took an entire year of coughing and significant weight loss before the GP took any form of interest. I swear post viral illness would have been the last diagnosis considered prior to covid!

I'm seeing a lot of patients who have been told they have long covid and I do wonder how many of them actually have something else. Though they do seem to get quite a lot of tests to rule out other things.

To be fair this condition was likely triggered by Covid (I'm in the same boat) it's hard enough to diagnose with a functional NHS and many lost sight from this condition prior to this.

That said Covid is a mass disabling event and the sheer volume of post Covid patients make treatment almost impossible.

It took me a month and five GP visits to procure a BUPA appointment and then an 8 week wait meaning I've had to rest 23 hours a day to take the pressure off my eye. I very much appreciate I'm lucky enough to be able to A rest and B pay.

My parent was diagnosed with along with 2 other people I knew separately.
I strongly believe there is a connection with the vaccine and this.
I know many people will say how silly etc etc the vaccine is out saviour but (and I had the vaccine myself) I find it’s a coincidence that’s hard to ignore.
Whatever you believe, the message here is clear, do not ignore these symptoms!

This. 100% this.

So sorry OP. That's awful. NHS services have completely gone to pot.
I understand the long COVID assumption. I had COVID back in January and over the year I have felt really poorly since. No energy whatsoever and it was assumed to be Long COVID.
I asked the doctor for bloods 2 months ago and it came back that I had folate deficiency anaemia which explains the tiredness.
If I didn't ask and persist I wouldn't know and everything is being put down as long COVID rather than a thorough investigation happening.
It's this behaviour that is causing serious illnesses like your mother's to go missed.
Fingers crossed for her xx

Poor treatment and ignoring of symptoms though has been going on for a long long time in the NHS. It predates the current situation by decades.

My own FIL was in a bed by the nurse's station so they he "could be kept an eye on" after being readmitted with an infection after major abdominal surgery. He mentioned to them several times that he was losing feeling in his feet and it was spreading upwards.

They took no notice and it was only when a friend of mine, a senior nurse in a different hospital, dropped by to visit him and raised a huge fuss that a doctor was called to look at him. That resulted in an urgent blue light transfer to Atkinson Morley where he had an emergency spinal operation within hours. If she hadn't been there he'd have been paralysed for life.

I’ve never heard of this condition so thank you. Sorry about your poor mum :(

Im sorry about your Mum.

My Mum was diagnosed with this 15 years ago. Turned out it in her case it wasn't, it was kidney cancer, which was found by accident when she had a seizure. There is a backstory, some of which was my Mum and some the GP surgery.

I think as OP said, with any diagnosis we have to try and trust our instincts and advocate for ourselves and loved ones as much as possible.

I'm so sorry to hear this, but thank you for sharing this information. We all must fight hard for our health.