To think this wasn’t all in his head?

[Harlowla]

I know nobody can diagnose anything but I just wondered if anyone had ever heard of anything like this before because I’m sure there must be an explanation somewhere.

Husband always lived life to the full right up until retirement and then he started to fall over a lot with no real explanation, he’d suddenly lose balance and fall.
Doctors could find no reason why but this continued and he would seem to find walking hard work until he just shuffled along very slowly with a stick.
Again doctors and hospital have no clue to why his legs apparently just don’t want to work.
In his words he knows what to do ie put one leg in front the other but he just can’t get his brain to get the coordination right and so his balance goes and over he falls.
Recently he has hardly been able to get out of the chair and only does for toilet breaks which I have to assist with to keep him stable.
Doctors have now concluded that he’s lost the use of his legs because he hasn’t walked for so long which while in theory yes he has but that doesn’t explain the cause only the affect.
Meanwhile we have no idea what’s wrong because nobody seems to be able to tell us anything and now I’m a full time caregiver to him and apart from the suggestion of it being psychological it doesn’t look like we’ll ever have any answers to what’s happening.

He now can’t balance to stand up anymore and when he falls he can’t get back up again so I have to get assistance from neighbours or call someone to pick him up but despite this his brain is still as sharp as ever but it’s just not getting messages to his legs it seems.

I just wondered if there was anybody anywhere that had experienced anything similar?

I've got a relative (young, early 30s) who totally lost the use of her legs. Doctors can find no physical cause. She now has 24/7 carers as she can't do anything herself.

Fnd? MS?

What tests has he had

What kind of tests have they done? Has he seen a neurologist? Had a full range of scans?

Goodness everything under sun it seems. At one point he had a brain imaging scan as they suspected early onset Alzheimer’s could be behind it but no evidence there, he’s diabetic type 2 so it’s been suggested that it might be that but he’s had various tests and now they don’t think it is so still no answers.
He’s been back and forth to the doctors for almost a decade, nobody knows but they all seem quick to rule out other doctors suggestions.
I thought MS after a layman’s google search but the professionals don’t seem to agree.
I hadn’t heard of FND but just looked it up and it sounds like a possibility.
He’s been admitted to hospital after falls and is discharged again with no answers with one person suggesting he couldn’t walk because he wasn’t trying to but when he could walk he was unstable because it’s his balance that he has trouble, he just suddenly goes.

i would say MS tbh. There isn't one conclusive test for it. I would ring an MS charity and ask for information and advice.

What are his B12 levels?

I really don't know but my dad has problems with his legs and walking for ages . Tests including MRI and even cat scans showed nothing for about 3 years. Then one admission to a&e for something else ( trouble breathing ) and a scan revealed a brain tumour. No idea why previous scans only months before showed nothing

I am afraid that my dad, his brother and his sister all eventually died of brain tumours (gliomas ). All three of them started symptoms with problems with their legs and walking, all at least 2 years before being finally diagnosed

That is not to say it has to be that just that it could be anything and negative tests doent always mean anything . They need repeating every year or so if symptoms persistent

I can’t believe there’s no explanation, there’s several different things I can search up and see it could be this or that but if the medical profession are baffled then I don’t know where we go from here.
He just gets sent home with a sheet of leg exercises to do but I think we’re past that.

The shuffling made me think of Parkinson’s. It can present in different ways (most people think tremors) but a friend had the shuffling where he was trying to tell his legs to work, but they just wouldn’t. Took him ages to get diagnosed too.
https://www.parkinson.org/understanding-parkinsons/movement-symptoms/trouble-moving

Sound’s neurological.

Have they ruled out Parkinsons? Legs and brain not coordinating sounds like what happened a family member, and it turned out to be the early stage of Parkinsons.

I’m very sorry to hear of your loss, thank you for sharing I will look into this too.

Parkinsons was my first thought when you mentioned shuffling.

My FIL started off with numb toes, walking with a really heavy foot, wearing calipers. All to do with type 2 diabetes, 20 years later and although the diabetes is under control he has a very weak lower body and leg control.

Could it be something to do with the middle ear?

if the medical profession are baffled then I don’t know where we go from here.
IME they don't look at things holistically. For example, they might not connect the falling to his brain.

My lay-person guess would be something affecting balance - possibly neurological. The diabetes could be a factor.

The retirement could be a factor - not in causing it but in 'allowing' it to come to the surface (a bit like being well all year then getting a bad cold or flu every Christmas).

I first thought of Parkinson’s too - family member had issues walking and this was eventually discovered to be the cause.

Sounds like FND, the hoover test can give positive confirmation of diagnosis. Ask to see a neurologist. Good luck finding answers.

Your poor husband, and poor you, having to deal with this. As he has had all the relevant medical investigations, and various conditions have been ruled out, it could be (as another poster suggested) FND. It's worth looking into and there are helplines and support groups for both sufferers and carers.
FND Action – UK Charity for Functional Neurological Disorder

https://neurosymptoms.org/en/ has better information than the NHS for this

Parkinsons or a brain tumour sounds the most likely OP. But surely the medics have done tests for these?

Same with my father.

OP has he any other symptoms, tremors in hand, sexual dysfunction, memory loss, sleep disturbance, sweating, reduced facial expressions, speech or swallowing issues, problems with vision, etc

It took over a year for my friend to be diagnosed with Parkinson's. The first recognisable symptom for him was shaking and still the GP didn't take it seriously. Friend had to really battle to get an appointment to see a specialist.

He walks with the shuffle. Now that I know more about the symptoms, I can recognise that shuffle in strangers when I am out. Another very noticeable change is that there are facial changes.

Push for an appointment with a neurologist - don't let the GP dismiss your concerns.

I don’t want to imagine symptoms but mildly I could say all of the above but not anything other than the natural decline you’d expect to see at our age. I could say the same for myself but then again I don’t want to dismiss an important symptom because I assumed it was age related so I am interested to hear what you were thinking.
He seems to have aged a considerable amount lately but then muscle wastage has made him particularly frail and he’s not got the bladder control he used to and then not going out socially has made him quite withdrawn.

He doesn’t do anything except sit in the chair so he’s got nothing to talk about and has lost a lot of his personality quirks and humour and talks in a quiet quiver.