Could this be long COVID? How do we get it recognised?

[ActonBell]

My father in law has had concerning symptoms over the last few months. He is in his 60s and had some problems with his hearing before the pandemic. He now has significant hearing loss, sudden episodes of total exhaustion, aches and pains, depression and panic attacks.

He has had a lot of tests and they have ruled out a range of possibilities but not found any cause. Prior to this he was very active (cycling, hiking) and in good health. He would always be up early and now he is in bed until mid-morning everyday and dropping off throughout the day.

He has never had a test for COVID but we are wondering whether he could have had an asymptomatic case or very mild symptoms and then be experiencing long COVID.

The doctors are treating the hearing problem as a separate issue and are now grouping the other symptoms as ‘something post-viral’. He hasn’t had any significant period of illness, no flu or other viruses which could have triggered this. We are a bit frustrated that no one is even considering COVID as a possibility.

Could it be long COVID? What would be the best way to get the doctors to consider this? He has mentioned it but they told him it’s not possible as he’s never had a positive test.

Thanks.

It is possible to get long Covid diagnosed without a positive Covid test as so many people weren't tested at the beginning.

Speak realistically to the GP about your concerns. If they think it's not long Covid then why?

Worth noting that not much changes with a diagnosis, and treatment is the same as chronic fatigue/ ME; ie there is no treatment

He may not have had a positive test but before ruling out Long Covid they should surely have tested for antibodies? This would confirm that he had had it previously.

But what difference would a long Covid diagnosis make to his care?

Even if he were referred to a long Covid clinic they would treat the symptoms as best they could, there’s no magic pill.

Could it be stress induced due to pandemic?

I'm not sure having it 'diagnosed' as long covid will make any difference tbh. Long covid is pretty much post viral issues anyway.

My GP surgery have put down my ongoing health issues as long covid or post viral, but tbh it's not making a difference to anything they're doing, or not doing. Much of the issues are similar to after I had pneumonia several years ago. They didn't really do anything about it then either. Not sure there is much they can do from what I've gathered.

Older men seem to get vertigo & hearing conditions a lot which have other effects like causing anxiety & fatigue, Menieres disease, etc. I was unaware of any treatment for LC so don't know what help a diagnosis for that would be.

An antibody test may help provide some answers although as far as I understand they are not 100% accurate.

Either way I think it depends on whether his doctor is still pursuing other tests and options. Significant hearing loss is not really something I would want to put down as just stress due to the pandemic, and then coupled with the other symptoms too I understand the concern and need for a diagnosis.

He now has significant hearing loss, sudden episodes of total exhaustion, aches and pains, depression and panic attacks

Could the depression and panic attacks be causing the other physical symptoms other than the hearing loss? It’s very common with depression and panic attacks to feel exhaustion, aches and pains.

The hearing loss is different, but is very common as we age. In fact even in younger peoole. The hearing loss could also be feeding his depression.

Has he got the appropriate hearing aids for the hearing loss? And is the depression and panic attacks being treated?

He could do a Covid antibodies test. My DP used BioCard, it's a home finger-prick blood test, you fill a small tube and send it back. Tells you if you have any antibodies, you can have them up to a year after being infected (at least)!

The best treatment (as far as I'm concerned) is plenty of rest and making sure one's diet is very healthy, probably taking some supplements too, such as B-complex.

Long covid is exactly that ‘something post viral’. That’s literally what it is. I had flu in Jan & I’m still under the weather now & my doc calls it post viral illness. Or you know, long flu..

His problems won’t be treated any differently if it is long covid or not unfortunately. Obviously actual medical issues are one thing but panic attacks & depression are not a post - viral illness. They are a mental health issue possibly triggered by increasing hearing issues etc. The exhaustion is likely linked to the depression..

If he hasn’t obviously had covid, I personally wouldn’t leap to such conclusions.

I know this sounds a bit silly but maybe send him for an eye test. Often they will pick up things that might need referring for if GP is being dismissive. I'm thinking it could be dementia, anxiety would certainly fit with this.

Thanks for all the responses.

My DH and his brother both have a range of serious conditions (not the same
ones - it’s nothing genetic) some of which are not easy to definitively diagnose. We have quite a lot of direct experience of the difference diagnosis can make.

I realise that a diagnosis may not have any impact immediately (or even longer term) on treatment but from our experience even a probable diagnosis can help in 4 ways. Firstly, changes in care happen following new medical research - without a diagnosis you may not get access to care and treatment as it develops. Secondly, studies show that being able to ‘name’ our condition and have it recognised can help with the psychological side of healing, which impacts the physical side. Thirdly, some medical professionals are more likely to take you seriously with a named condition than with an undiagnosed set of symptoms. Fourthly, a diagnosed condition can allow medics to group symptoms and see the connections between things that would otherwise be treated separately.

As well as this there are developing long Covid online support groups and communities which could be helpful to him if that is what the issue is.

Of course sometimes a clear or even probable diagnosis isn’t possible but we would like to try.

We’re not ruling out other possibilities. It absolutely could be a mental health issue or the other symptoms could be coming as a consequence of the psychological impact of the hearing loss.

@isitmeorjusteveryoneelse -it’s interesting you mention dementia. What should we be looking for? His mother had severe dementia so that would be a concern.

Thank you for flagging the antibody test option - I hadn’t realised you could do that privately.

Also depression and anxiety have physiological aspects as well as psychological aspects and are indeed recognised symptoms (on the NHS list) of long Covid.

The truth is whilst being possible it’s highly unlikely to be long Covid.

He has clinical depression and anxiety attacks. With this often comes physical symptoms, feelings of exhaustion aches and pains. Some people with severe depression can’t get out of bed due to the sheer exhaustion they feel.

Going dead is sadly quite common as people age

If you seperate the two out, then it is likely there is nothing to diagnose. But simply ensuring he gets the right treatment and support for his depression and panic attacks, and has the right hearing aids for deafness.

Of course there could be something else, but as he’s had a variety of tests. And due to what you describe. It does seem likely it’s exactly what it says on the tin.

Going dead is sadly quite common as people age

God, sorry that should say going deaf, what a typo 😱

I'm really not an expert, it's just changed in how they are, there are different types of dementia. My FIL was much as you described and changed very suddenly including being unmotivated when previously very active. What I was suggesting is there are ways to get an MRI and the optician referring is one, if GPs not interested. Initially FIL got diagnosed with Vascular dementia, but has since developed other things.

Regardless of Covid it sounds like a GP visit would be a good idea.

It is probably nothing but it is better to be safe than sorry.

The truth is whilst being possible it’s highly unlikely to be long Covid I don't think it is 'highly unlikely' althought there are a whole host of other things it could be, some of which are statistically more likely.

Just in case anyone comes back to this, he has been diagnosed with Chronic Fatigue Syndrome.
We are very pleased he has a diagnosis as now he can get the right support, though we understand it’s more about management than treatment as such.

I would still urge caution around this diagnosis..having CFS myself its SO important to be really careful to exclude other diagnosis and something doesnt sound right about his combination of issues, though a period of stress can trigger CFS as much as a viral infection can... sometimes people are harbouring latent viruses such as epstein barr that can be activated by excessive stress (such as many will have gone through in the last year. )I would echo the persons comments about other brain symptoms....have they excluded acoustic neuroma as this could explain the significant /progressive hearing loss??

@cls123 - you are very wise! His consultant took another look at his scan results and discovers water on the brain which had been missed previously!
They think that’s behind the brain fog, hearing loss and other problems he’s been having. He’s developed balance and walking problems too that fit this diagnosis. He’s having more tests but hopefully there’ll be a treatment plan then. They seem quite optimistic that they can tackle it.

@simbobs

He may not have had a positive test but before ruling out Long Covid they should surely have tested for antibodies? This would confirm that he had had it previously.

If he's been vaccinated he would most likely have a antibodies from the vaccine.

A diagnosis of long COVID wont help OP and could actually be dangerous seeing as he may have had COVID. They need to get to the bottom of what is happening to him.

It's great that you've had the cause found, well done for pushing for good treatment for your FIL. I hope he makes a good recovery soon.