AIBU?
Traffic post - early onset dementia??
Snappymcsnappy · 31/10/2018 11:28
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)
Sunnyday1203 · 31/10/2018 11:32
Sorry Snappy must be very scary. Get a 2nd opinion immediately, he clearly is not well. I am not a Dr but these do not sound like Dementia, something I know a bit about. You have to be strong and not be fobbed off. More tests needed I would say.
Blahblahblah111 · 31/10/2018 11:32
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Aquamarine1029 · 31/10/2018 11:35
I would look into the possibility of Lewy Body. His symptoms are almost textbook for it. Get back to the doctors immediately.
Snappymcsnappy · 31/10/2018 11:35
It’s a nightmare.
I don’t know about encephalitis, he had a MRI brain scan months ago (he has had the neurological issue over a year) and they could find no fault except a small pineal cyst that they say is an incidental finding.
MatildaTheCat · 31/10/2018 11:35
Urgent GP appointment and request a specialist neuro review ASAP.
Hope it can be diagnosed and treated. Very scary.
Make a list of all the symptoms you’ve noticed. Mood changes, visual disturbance etc.
TwinsetBeck · 31/10/2018 11:36
I hope he is ok. Has he had any sort of brain scan to check for a tumour? Fingers crossed 🤞 for you both.
Snappymcsnappy · 31/10/2018 11:40
I bet know if I could cope if it is lewy.
NHS website is saying 6 year prognosis and no cure
loobylou10 · 31/10/2018 11:40
Lewy body dementia will show on a brain scan - that's how my mum was diagnosed. Sorry you're going through this OP 
Blahblahblah111 · 31/10/2018 11:42
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OldPodge · 31/10/2018 11:42
Sorry I wouldn’t agree about the LBD. Sounds like you need to get to the GP ASAP for an urgent Neurological review to me.
Snappymcsnappy · 31/10/2018 11:47
I hope lewy would always show on a brain scan because then it almost certainly isn’t that as his scan showed no abnormality.
I will get a doctors appointment and seek a referral for a third opinion.
I don’t think I would physically be able to get him to a and e.
He would refuse to sit for that length, but I think I could convince him to get a gp appointment
Bobbybear10 · 31/10/2018 11:50
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.
JJ2009 · 31/10/2018 11:52
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
foggetyfog · 31/10/2018 11:53
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 
sazzle27 · 31/10/2018 11:56
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...
MNOverinvestor · 31/10/2018 11:57
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.
Snappymcsnappy · 31/10/2018 12:09
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
Thebluedog · 31/10/2018 12:13
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
OldPodge · 31/10/2018 12:21
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?
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