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?

Similar to parkinsons, but less common, is huntingtons. It also results in inability to control muscles. My personal experience with the disease hasn't shown as impacting walking early on, but it's 4 members of the same family which may be why. Huntingtons can be diagnosed via blood test.

A lot of what you describe - especially the vocal quiver sounds like Parkinson’s. There’s not a test currently but has this been ruled out.

I also think MSA, but it’s not a particularly tricky diagnosis for neurology so the fact they haven’t diagnosed this makes me think they’ve ruled it out on one of the tests? I think you’d need to ask what differentials they’ve ruled out in order to get much more help here

good luck

Is he in pain? Are his legs numb? Have they looked at spinal route? ? Spinal stenosis?

I had this when I was in my 30’s but it affected my arms too. In the end DH took me to a&e in a wheelchair. I was admitted to the MS/stroke unit where they ruled that out (and also ruled out guillian barres syndrome sp?) and eventually discovered a disc lodged in my spinal cord in my neck. I wasn’t in any pain so it wasn’t obvious at first that it was a cervical prolapse (it went on for months with a slow decline)
anyway thankfully I had emergency surgery and against the odds I restored the use of my legs and regained the feeling in my arms. Bar a bit of nerve damage/slight balance issues I’m ok
jusy putting it there in case any of it is any use. I think MS can be difficult to diagnose iirc as they told me it wouldn’t necessarily show on a scan. Hope you get some answers soon. You can choose to have investigations at a current hospital.

Sorry to read this.

Sadly, mainstream medicine often dismisses symptoms as psychological when they can’t find anything with their limited tests. They forget that medicine is an ever evolving field and does not have all the answers. I think there’s some good suggestions here to explore but you may need to push and consider going private or the alternative road. Symptoms don’t happen for no reason - there is always a root cause.

Just a few thoughts…

Copper deficiency can cause this exact situation and docs are very unaware of this. They almost never test for it. Can also be caused by excess zinc from dental fixtures. Or too much vitamin C. or too much zinc in supplements.

Gluten ataxia is a possibility - there is a world leading German doctor based in Sheffield but long to get an appointment.

Any medications used? Could be an adverse reaction. Docs terrible at recognising these. Way more common than we are led to believe.

Tested for any viruses or Lyme?

What is his diet like? Getting plenty of nutrients?.

Could also be B12 or other B vitamin deficiencies esp if gone vegan.

What about heavy metals? Has he ever been anywhere he could have come into contact with things like mercury or lead? There are horror stories of people with such symptoms getting from mercury fillings, lots of tuna or working in places with toxic environments.

Def want to rule out well established neurological conditions like MS, Parkinson’s etc.

Best wishes in getting to the bottom of it.