To think this wasn’t all in his head?

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.

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.

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

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

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.

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.

@m030978 Thanks for responding, it sounds horrid for you and your Mum. I suspect it won't be long before Mum needs catheter, and not sure how long she'll keep mobile. It's really difficult as she is determined to remain independent, but I think she'll need to be in a home soon. Dad can't (and isn't) really caring for her properly and there is a limit to what I can do.

@HowDoYouSolveAProblemLikeMyRear I'm sorry to hear about your Dad.

Hugs to all and to OP who is going through this sorry for the thread hijack.

It sounds like Parkinson’s to me as well, has this been investigated?

My mum has parkinsons and it made me think of that.

I have MS and it does also sound like that could fit, it can be difficult to diagnose.

Is he under a neurologist?

Doctors never know why anything happens. They just want to give you pills

Have they considered Normal Pressure Hydrocephalus (NPH)? It typically starts very much the way he's described his inability to walk and is often misdiagnosed or missed by doctors.

To me it sounds like Parkinson's.

My Nan had dementia and would literally forget how to walk.. in fact it was one of the first symptoms.

Parkinson’s, CBD, brain tumour, MS, MND? A friends husband had CBD and it was brutal, does sound somewhat similar. Poor you, have you got some support mechanisms in place ?

Has he had a full MRI on his head and neck? Spinal problems can cause sudden or gradual loss of mobility, particularly if the spinal cord is being compressed. As PP have said, if he hasn’t already, I’d recommend him seeing a neurologist.

I'm so sorry about your mum. My dad died from this last year.

The brain/legs disconnect and lack of quick diagnosis that OP described also made me wonder about PSP/CBD.

Ben Lynch is a quack. Go down that rabbit hole with extreme caution.

B12 deficiency is absolutely worth investigating, but ignore all the MTHFR bollocks. It’s mostly used to con very sick people into buying expensive supplements, B12 injections with standard cofactors are all that’s needed for the vast majority of people.

Mum's still here, but deteriorating badly now, she's been unable to walk for about 1.5 years now and is just losing the ability to swallow. She still has capacity so is refusing tube feeding at the mo. She also has a permanent catheter.
Its only been about 2 years from diagnosis I think, she was diagnosed with Gluten ataxia first.
She's only 76, I keep thinking of all the years of planned retirement she's lost. My dad died last year at 78 from a heart attack. She was his carer for 20 odd years so it all went very pear-shaped in the last few years and they both ended up in the same (fabulous but expensive!) care home. They refused help until dad ended up in hospital with pneumonia and refused to leave her home alone... then they had no choice. Mum hasn't been home since. Dad did try, but failed to cope on his own so chose them the best care home he could find.

I moved my Grandma to the same care home last year, she's 99 tomorrow and is in better shape than her own daughter. Its really hard on her (and the rest of us) how fast she's going downhill.

((hugs)) to you 💗

Has he got a high arch and/or hammer toes?

I was going to suggest MSA. My mum had this and falling was the first symptom, scans and tests were clear until the very end

Has he been assessed for MSA? A less common neurological condition. My dad had this and the stumbling and falling was the initial symptoms.

This sounds like a gentleman I know who had a form of parkinsonism which caused 'freezing gait'. Basically an inability to walk - it's like the messages from the brain are not getting to his legs. Has your DH been investigated for Parkinson's and related conditions?

Thats very tough on you both OP, I am sorry to hear you are going through this. I am thinking Parkinsons first - the diagnostic criteria are below:

https://www.ncbi.nlm.nih.gov/books/NBK379754/

Could also be MS or FND.
Less likely could be Huntingons Disease- symptoms are cognitive, psychiatric,mood issues followed by loss of muscle tone, rigidity in muscles, eye, speech and swallowing issues.

I think Parkinsons would fit more of the symptoms. It also includes depression, cognitive impairment and memory problems.

Symptoms include
Tremor - worse on one side, gets worse during mental tasks such as spelling words backwards
Rigidity in joint
Bradykinesia - movements getting slower and smaller eg handwriting gets smaller, smaller steps/shuffling, faster steps to avoid falling. difficulty turning around (takes lots of little steps), reduced facial movement and expressions.

Diagnosis is based on history and examination findings using the criteria linked above - its done by a specialist.

I am not a doctor, I just read medical books so I am only guessing and could be very wrong.

I hope you get some answers soon.

@m030978 Can I ask if she is still with you? And if not, how long from diagnosis to losing her was it? My DM has been diagnosed with this, and is now rapidly going downhill quickly. She is very frail and falls constantly, can't swallow properly and squints with one eye and is becoming incontinent.

I don't feel her quality of life is very good, and if I'm honest I'm hoping she doesn't linger like this for donkey's years (she's currently 87 and was very fit and active before this illness).

The prognosis isn't good and specialist says she will probably need tube feeding at some point and she's adamant she won't have this. It all sounds really unpleasant. She's currently still at home and she and Dad won't accept outside help and he is 90.

My mum was similar and was eventually diagnosed with Progressive Supranuclear Palsy. It started like Parkinsons, but without a tremor.
It took a specialist neurologist at Sheffield Hallam to diagnose it.