Traffic post - early onset dementia??

[Snappymcsnappy]

Wondered if anyone might have any advice?

My DH is 30, always been very ‘quick witted’, clever, calm, not one to forget things or stutter words.

But in the space of the last two weeks he has started putting things in the wrong place - loaf of bread in the fridge, toothpaste in the cereal cupboard.
He asked me when dinner was, totally forgot he had it an hour earlier.
There have been times where he has forgotten things like his date of birth.
Forgotten he had put the tumble dryer on etc.

I am getting increasingly concerned.

To further complicate, he has a mystery neurological problem that he has seen two specialists for.
With this problem he gets involuntary movements, twitches in legs, shaking fingers, twitching eyelid etc.
The side changes and it occurs mostly in the evening (not during sleep).
Joint pain and fatigue, when really severe he struggles to walk and drags feet, reduced arm swing.

The specialists are adamant this is NOT Parkinson’s or Huntington’s.
whatever it is, it responds to Ropinirole (dopamine agonist for Parkinson’s) and mucuna puriens (natural levodopa)

Help me?

I am so worried and have very little faith in the doctors who don’t seem very concerned (about the neurological problem - they don’t know about the memory)

[AamdC]

I used tp work in Dementia care , early onset Dementia is very rare but obviously tjere are cases , i would push the Drs for tests , is there a family history of Dementia ? I nursed two men with early onset Picks disease both of whom had a family history , has he been under any stress ? Stress and anxiety can cause all kinds of symptoms

[Mbear]

I had very similar symptoms about 18 months ago and spoke to the gp who referred me for a brain scan. Nothing was found (haha) the doc thinks I was very tired and run down. I have very low ferritin as well.
I think what I’m trying to say is that rather than the memory issues causing all the tiredness you mention, the tiredness could be causing some of the issues with the memory. I am now super aware that I now have this tendency so I have a lot of strategies in place to make sure I don’t forget things. I also have to concentrate a lot more.
Sorry, just a thought.

[swingofthings]

Il it b12 deficiency should definitely be ruled out. Very severe deficiency could lead to irreversible Neurological issues. You can be deficient and still have normal results on the standard blood test that gp prescribe so he would need more intensive testing.

Other illness that could cause similar symptoms is Lyme disease.

[DarthLipgloss]

It could well be part of his neuro condition, as others have said Lewy body dementia which is related to Parkinson's has similar symptoms but is very rare in under 65s. Still possible or could be lots of other things.
Get his neurologist to see him asap. Good luck OP x

[Witchend]

With the forgetting, my Gran was like that for a while. Turned out to be a urine infection.

[GoBigOrange]

Hashimoto's encephalopathy?

Or heck, just plain old Hashimoto's disease? Untreated thyroid disease is no walk in the park. Has he had tests for that?

[Osirus]

His physical symptoms sound similar to motor neurone disease, and this can coincide with a type of dementia. Have they looked into this as a possibility? I’m not sure how it’s diagnosed so it may have already been ruled out with the tests already done.

[epicclusterfuck]

How is his sense of smell?

[Cherries101]

The most important question to ask here is do the symptoms come or go, or are they getting progressively worse? For example he forgets his date of birth one day but remembers it just fine the next? He twitches but gets better the next day. If so it could be an unusual form of MS or MG or even Parkinsons and so he needs follow up with a specialist. Demand a referral or go to Bupa and pay for a referral letter to give to your GP.

[Olderbyaminute]

There’s a real worry as he has new onset neuro symptoms-if they cannot figure it out I would push for a rare diseases doctor (if that exists in UK) if he were my patient in hospital I would call an emergency overhead page and get the cavalry into see him and he’d get stat brain images and assessment performed. If he refuses A&E just give him the list of things he’s been doing the past week to persuade him

[anniegranny]

My stepson has Myasthenia gravis
The symptoms are very similar to what you describe. Diagnosis is by blood tests and electrical stimulation.There is a treatment which works if that's what he has.
I hope you get an answer soon 💐

[mrsjoyfulprizeforraffiawork]

Med sec here (lots of neurology experience). What sort of scan did he have? The people I work for would probably do an MRI scan of brain and an MR angiogram of intracranial vessels. Also, an EEG (epilepsy presents in weird ways but, annoyingly, EEGs can be normal even if you have it as you might not be having any seizure activity at the time the EEG is performed). Plus a battery of routine and slightly weird blood tests. He needs to see a good neurologist. Are you able to pay for a consultation with one privately? (they could at least suggest tests they would recommend even if you have to go back to someone else in NHS for further care/investigation). Unfortunately, quite a few people with neurological conditions never actually can be given a diagnosis as it is a hugely mysterious speciality even now. Can your GP refer him to The National Hospital for Neurology & Neurosurgery (Queen Square) under NHS? They are all brilliant there(I don't work there so am not biased!).

[siakcaci]

Any new medication?

[crosstalk]

Meant to add it might be worth contacting the charities for Lewy's, Dementia etc to ask their advice. They clearly can't diagnose over the phone but might suggest useful paths to diagnosis and help.

[crosstalk]

OP so sorry for what you are both going through. Can you create a diary of events (recreate if necessary) and issues? It's often hard to remember everything in a GP's surgery and if you have a copy for the doc to read it would help - with major incidents in bold. Try emailing it to the surgery with a request for a double appointment or if you don't like the idea other people than the GP can see it, drop it round. Have in mind what you would like the outcome to be - referral to a neuro specialist (look up the best ones locally beforehand) - blood tests to exclude deficiencies - a review or redo of his brain scan. good luck and all the best.

[Snappymcsnappy]

Yes, I agree.
There are so many investigations that could be done but they don’t seem to want to do them.

Re headaches, my DH gets migraines and severe headaches fairly frequently yes.

[OldPodge]

As others have said, you need to keep pushing for more investigations. I wouldn’t accept that they won’t find a cause! There are many other things to rule out.
Have you got the support of other family members?

[Thebluedog]

Get him back to the doctors. Has he had any serious headaches or migraines lately? My mum has vascular dementia, this followed a very very minor stroke (think really bad pain in her head whilst walking home) and she would do the same, almost changed overnight. Took a while to get a proper diagnosis and there are so many other things that could be happening. It’s also now started to affect her motor skills

[Snappymcsnappy]

I will insist on a B12 test, we were discussing B12 just the other day actually when I was googling sudden memory issues.
He has quite a meat heavy diet mind and apparently B12 is predominately found in meat.
But will definitely get that tested.

We have considered MS as a possibility and asked the neurologist but he said he doesn’t think so.
In fact, he feels that we will probably never find a cause!

Our main concern was/is Parkinson’s given the fatigue, and when he is bad we are talking fatigue as in wakes up at 8, takes the kids to school, gets home half 9 and sleeps until 9.30/10 at night, stiffness, joint pain, reduced arm swing, dragging/shuffling feet, twitching at rest not when engaged in activity that is worse on one side.
But the neurologist is adamant it isn’t Parkinson’s.

Says Parkinson’s doesn’t switch sides (my DHs right side is worse) and doesn’t have any periods of remission (DH seems to have periods where he is totally normal then very bad periods where he can’t walk without difficulty and is barely awake and periods in between

[MNOverinvestor]

Has MS been raised as a possibility? Only because a friend's DH was diagnosed a few years ago and forgetfulness was one of the early symptoms, along with fatigue and muscular problems. It's now kept under control with medication.

[sazzle27]

If i was you... I'd try to scrape money for a private appointment..

The doctors probably dont think it is early onset, predominantly due to age.. but from what youve described it needs to be thoroughly investigated!
It could be simple like blood sugar or an infection, but the fact some symptoms have last a year is worrying...

[foggetyfog]

You need to tell the doctors about the memory problems, it seems likely they are further symptoms of a neurological condition. Phone your GP and they will hopefully refer him back to hospital. If not I think I'd take him straight to A and E as there is clearly something wrong. Try and stay strong

[JJ2009]

Hi
Has he been checked for B12 deficiency? In severe cases it can have similar symptoms.

Keep pushing the doctors until you get answers. Definitely get another opinion if the symptoms are getting worse

Good luck

[OldPodge]

Hope all goes well OP

[Bobbybear10]

Honestly it could be something as simple (for want of a better word) an infection or it could be something more serious, it could even be really bad stress and anxiety.

You need to keep chasing the GP and really as many tests as you can.

There will be an answer but you will both need to push hard to get the tests etc in the first place, so GP now and if he has another episode of shakes etc then A&E.