What will happen next?

[Cc1]

I'm only 35 but have a family history of presenile dementia (my dad) and have recently been having symptoms that have worried me, culminating in not recognising where I was when I got off the coach (I was on the corner of my road...!).
My GP was great and referred me under the 2wk wait system to a neurologist for 17th sept, but I'm just wondering what is likely to happen at the appointment. When I've done the online tests like the SAGE test I seem to score well and I'm concerned the fact I do well at these tests (and my age!) will mean they don't look into it in much depth? Is this likely to be the case or do they routinely do further testing regardless just to be thorough?

Fwiw (long post alert!) things I've been struggling with include that general cloudy headedness, struggling to maintain concentration, it's like doing things on autopilot but with autopilot being broken if that makes sense? So getting dressed automatically but forgetting to put a sanitary towel on, putting the meal in without thinking and then wandering away forgetting I have anything cooking until it burns, leaving hobs on and doors unlocked, trying to use the grill with the door shut and nearly causing a fire, putting plastic or tea towels down on a hob I have just switched off, forgetting to use an oven glove, forgetting conversations my husband says we've just had (either me repeating myself and him saying 'I know, you just said that' or not remembering something he says he's told me 'I told you this, we've had this discussion three times now, I'm doing training on Thursday so I'll be back late'), forgetting I had made my son his packed lunch and going to make a second, occasionally using the wrong word when I'm speaking (either a word that sounds similar but means something totally different like perspective and perpendicular, or saying a word that would usually make sense in that context but isn't what I meant for example 'he gets his funded hours on sunday' (I meant 'in January'), not reading aloud so fluently as I'm stumbling over my words, losing time (went to put some washing away and thought I had been about an hour and it was maybe 1pm, it was 3pm and somehow that small task had taken 3hrs, largely because I'm wandering around in a spaced out daze some days not really knowing what I'm doing and getting easily distracted, the same day I went to hoover, I must have walked in and out of the kitchen to fetch the hoover about 6 times, I didn't even really stop and think 'hmm, what did I come in here for?', more just wandered out again absent mindedly, then saw the fluff on the lounge carpet again which once more made me think 'oh yes, hoover!' before repeating the process, also didn't have the foresight to put the hoover on to charge when I first started tidying up which I normally would, in my head that was part of the hoovering component of the day so it seemed perfectly logical to do everything else first and then put it on to charge and have to wait for it... That inability to put 2+2 together had become an issue, for example in one half of my head I know I'm 30 seconds away from my junction, but in the other half of my head I'm thinking 'these cars in front are slow, I need to go round them', without linking up that I won't have time to get round before I need to go off. Losing my train of thought whilst speaking and finding it hard to process what other people are saying quickly enough to respond properly. Misplacing things constantly, having to reread passages of my book as I've got no idea who a certain character is etc, poor judgment (I put some oil on to heat for an omelette then decided to hoover whilst it was heating, spoiler alert, when you heat a small amount of oil on maximum heat you do not have time to hoover the house before it begins to smoke and set off the fire alarm!). Going into my sons bedroom not the bathroom when I needed to use the toilet. Being very irritable on occasion and spacey on others. Forgetting how to spell certain words. Needing to use road signs etc to get to my mother in laws house, a relatively short and simple journey which I have done weekly for the last 7yrs and used to know by recognition which turnings to take and lanes to use. Culminating in not recognising my own street as i mentioned before. It is making work difficult as I'm a midwife and constantly worry that I've made a mistake with a dosage of medicine or missed making an urgent referral or my clinical judgment has been poor etc... Gp has done bloods for b12 and thyroid etc which I'm awaiting results for, also feel mildly depressed so wondering if it could simply be that but I am a bit worried it may be something more.... But some days I am absolutely fine and as I say, I seem to be scoring fine on all the online tests, so I'm concerned they won't pursue an answer but will just do a memory test, say I'm fine and leave me to crack on?

Well done if you managed to read all that! But just looking for any wisdom you have, does this sound dementia like to you? What is likely to happen at my appt, will they dig deeper or fob me off? Should I be expecting to have scans etc on Tuesday or is this likely to just be a preliminary appt to make a plan for what investigations are needed?
Thanks so much for any info, sorry it was so long. I've also found myself rambling a lot

 

[canary]

Hello @Cc1 and welcome to DTP.
These sort of symptoms are possible due to lots of different things, only one of which is dementia. Did your GP do preliminary tests like blood tests to rule out things like underactive thyroid and vitamin deficiencies? If not, then they will probably organise this at the neurology appointment.

I think it very likely that the neurology appointment will be to give you a "neurology MOT" including memory tests, pen and paper tests and physical tests. From the results of these they will work out what to do. I doubt they will automatically dismiss your concerns if you pass the memory tests because not all forms of dementia affect the memory initially.

I think it very likely that the doctor would order an MRI and possibly even neuropsychology tests which test the functions of the brain in much more depth. After that you would go back and get all the results.

 

[Palerider]

Hello @Cc1 and welcome to DTP.
These sort of symptoms are possible due to lots of different things, only one of which is dementia. Did your GP do preliminary tests like blood tests to rule out things like underactive thyroid and vitamin deficiencies? If not, then they will probably organise this at the neurology appointment.

I think it very likely that the neurology appointment will be to give you a "neurology MOT" including memory tests, pen and paper tests and physical tests. From the results of these they will work out what to do. I doubt they will automatically dismiss your concerns if you pass the memory tests because not all forms of dementia affect the memory initially.

I think it very likely that the doctor would order an MRI and possibly even neuropsychology tests which test the functions of the brain in much more depth. After that you would go back and get all the results.

I agree with @canary, keep an open mind lots of things can cause this. Just to say make sure you write down any questions that you think of as you go along and be sure to ask them when you see the neurologist.

 

[Shedrech]

hello @Cc 1
a warm welcome from me too
it's good that your GP is checking you over thoroughly
as you mention, depression and stress can have a strong effect, as well as other things, and worrying can highlight issues
can I just mention the menopause too, I started early and found my GPs, even consultants, didn't seem to consider that possibility when I went along with concerns, because of my age (sorry if you're male and I missed that in your post !?)

 

[DesperateofDevon]

I'm only 35 but have a family history of presenile dementia (my dad) and have recently been having symptoms that have worried me, culminating in not recognising where I was when I got off the coach (I was on the corner of my road...!).
My GP was great and referred me under the 2wk wait system to a neurologist for 17th sept, but I'm just wondering what is likely to happen at the appointment. When I've done the online tests like the SAGE test I seem to score well and I'm concerned the fact I do well at these tests (and my age!) will mean they don't look into it in much depth? Is this likely to be the case or do they routinely do further testing regardless just to be thorough?

Fwiw (long post alert!) things I've been struggling with include that general cloudy headedness, struggling to maintain concentration, it's like doing things on autopilot but with autopilot being broken if that makes sense? So getting dressed automatically but forgetting to put a sanitary towel on, putting the meal in without thinking and then wandering away forgetting I have anything cooking until it burns, leaving hobs on and doors unlocked, trying to use the grill with the door shut and nearly causing a fire, putting plastic or tea towels down on a hob I have just switched off, forgetting to use an oven glove, forgetting conversations my husband says we've just had (either me repeating myself and him saying 'I know, you just said that' or not remembering something he says he's told me 'I told you this, we've had this discussion three times now, I'm doing training on Thursday so I'll be back late'), forgetting I had made my son his packed lunch and going to make a second, occasionally using the wrong word when I'm speaking (either a word that sounds similar but means something totally different like perspective and perpendicular, or saying a word that would usually make sense in that context but isn't what I meant for example 'he gets his funded hours on sunday' (I meant 'in January'), not reading aloud so fluently as I'm stumbling over my words, losing time (went to put some washing away and thought I had been about an hour and it was maybe 1pm, it was 3pm and somehow that small task had taken 3hrs, largely because I'm wandering around in a spaced out daze some days not really knowing what I'm doing and getting easily distracted, the same day I went to hoover, I must have walked in and out of the kitchen to fetch the hoover about 6 times, I didn't even really stop and think 'hmm, what did I come in here for?', more just wandered out again absent mindedly, then saw the fluff on the lounge carpet again which once more made me think 'oh yes, hoover!' before repeating the process, also didn't have the foresight to put the hoover on to charge when I first started tidying up which I normally would, in my head that was part of the hoovering component of the day so it seemed perfectly logical to do everything else first and then put it on to charge and have to wait for it... That inability to put 2+2 together had become an issue, for example in one half of my head I know I'm 30 seconds away from my junction, but in the other half of my head I'm thinking 'these cars in front are slow, I need to go round them', without linking up that I won't have time to get round before I need to go off. Losing my train of thought whilst speaking and finding it hard to process what other people are saying quickly enough to respond properly. Misplacing things constantly, having to reread passages of my book as I've got no idea who a certain character is etc, poor judgment (I put some oil on to heat for an omelette then decided to hoover whilst it was heating, spoiler alert, when you heat a small amount of oil on maximum heat you do not have time to hoover the house before it begins to smoke and set off the fire alarm!). Going into my sons bedroom not the bathroom when I needed to use the toilet. Being very irritable on occasion and spacey on others. Forgetting how to spell certain words. Needing to use road signs etc to get to my mother in laws house, a relatively short and simple journey which I have done weekly for the last 7yrs and used to know by recognition which turnings to take and lanes to use. Culminating in not recognising my own street as i mentioned before. It is making work difficult as I'm a midwife and constantly worry that I've made a mistake with a dosage of medicine or missed making an urgent referral or my clinical judgment has been poor etc... Gp has done bloods for b12 and thyroid etc which I'm awaiting results for, also feel mildly depressed so wondering if it could simply be that but I am a bit worried it may be something more.... But some days I am absolutely fine and as I say, I seem to be scoring fine on all the online tests, so I'm concerned they won't pursue an answer but will just do a memory test, say I'm fine and leave me to crack on?

Well done if you managed to read all that! But just looking for any wisdom you have, does this sound dementia like to you? What is likely to happen at my appt, will they dig deeper or fob me off? Should I be expecting to have scans etc on Tuesday or is this likely to just be a preliminary appt to make a plan for what investigations are needed?
Thanks so much for any info, sorry it was so long. I've also found myself rambling a lot

I’ve got M.E or chronic fatigue, & those symptoms apply to me at times- so you need to look at other things as well. Worrying will make any symptoms worse

I look at everything in life now as it is what it is & giving an illness a name doesn’t change how I feel, just gives me the ability to make informed choices!

Good luck & let us know how you get on

Could even be pre menopause!!
X

 

[Cc1]

Hello @Cc1 and welcome to DTP.
These sort of symptoms are possible due to lots of different things, only one of which is dementia. Did your GP do preliminary tests like blood tests to rule out things like underactive thyroid and vitamin deficiencies? If not, then they will probably organise this at the neurology appointment.

I think it very likely that the neurology appointment will be to give you a "neurology MOT" including memory tests, pen and paper tests and physical tests. From the results of these they will work out what to do. I doubt they will automatically dismiss your concerns if you pass the memory tests because not all forms of dementia affect the memory initially.

I think it very likely that the doctor would order an MRI and possibly even neuropsychology tests which test the functions of the brain in much more depth. After that you would go back and get all the results.

Yes he was very good and did quite a comprehensive set of bloods, had them done on weds so I guess it will be a few days before the results are back. That was a really helpful reply, thank you!

 

[Cc1]

hello @Cc 1
a warm welcome from me too
it's good that your GP is checking you over thoroughly
as you mention, depression and stress can have a strong effect, as well as other things, and worrying can highlight issues
can I just mention the menopause too, I started early and found my GPs, even consultants, didn't seem to consider that possibility when I went along with concerns, because of my age (sorry if you're male and I missed that in your post !?)

Ha, no, you were right, I'm female!

 

[DesperateofDevon]

I hope that you are able to relax a little bit, you are under a lot of pressure; job, home, family life, children & husband.
You didn’t mention if anyone at work had mentioned noticing any cognitive changes.
If they haven’t - as I’m sure you would have mentioned this - then I think you can relax a little.
Modern stresses are intense & I for one think I’m coping but my body says otherwise.
I repeat things I worry about to my husband. When tired I catch/ forget food is cooking as trying to multitask!
Often forget what I was doing as I’m distracted by another household job/ issue/ task / phone call. When really stressed I can read & not take it in....& as for the time warp factor....! Struggling to find the a word or name is a definite sign of mental exhaustion- frustrating & worrying though it is.
You didn’t mention what you do to unwind or relax, or socialise.
Basically I’m saying try not to worry but I know you will but this could be so many things - it’s also a symptom of modern day life & overload!
Thinking of you as have had many scans, MRI & tests; yes it’s scary but from what you have said in your post it sounds as if you need to slow down a little.
Take care
Xx

 

[Cc1]

I hope that you are able to relax a little bit, you are under a lot of pressure; job, home, family life, children & husband.
You didn’t mention if anyone at work had mentioned noticing any cognitive changes.
If they haven’t - as I’m sure you would have mentioned this - then I think you can relax a little.
Modern stresses are intense & I for one think I’m coping but my body says otherwise.
I repeat things I worry about to my husband. When tired I catch/ forget food is cooking as trying to multitask!
Often forget what I was doing as I’m distracted by another household job/ issue/ task / phone call. When really stressed I can read & not take it in....& as for the time warp factor....! Struggling to find the a word or name is a definite sign of mental exhaustion- frustrating & worrying though it is.
You didn’t mention what you do to unwind or relax, or socialise.
Basically I’m saying try not to worry but I know you will but this could be so many things - it’s also a symptom of modern day life & overload!
Thinking of you as have had many scans, MRI & tests; yes it’s scary but from what you have said in your post it sounds as if you need to slow down a little.
Take care
Xx

 

[Cc1]

Thank you .... Yes I'm hoping it's just stress, my husband suggested this as the most likely cause as I am rubbish at relaxing, on the rare occasions I don't have a child around I still have a to-do list with 10001 items to work on! Unfortunately someone at work has noticed, after one shift in a slightly different department to usual my boss apparently said to another colleague that she didn't know what was wrong with me as I didn't seem to know what I was doing that day, it was true, it was a particularly spacey bad day and I just felt dazed and confused! It's upsetting because I'd always been good at my job and don't want off days like this to get me a bad reputation!

 

[DesperateofDevon]

Thank you .... Yes I'm hoping it's just stress, my husband suggested this as the most likely cause as I am rubbish at relaxing, on the rare occasions I don't have a child around I still have a to-do list with 10001 items to work on! Unfortunately someone at work has noticed, after one shift in a slightly different department to usual my boss apparently said to another colleague that she didn't know what was wrong with me as I didn't seem to know what I was doing that day, it was true, it was a particularly spacey bad day and I just felt dazed and confused! It's upsetting because I'd always been good at my job and don't want off days like this to get me a bad reputation!

Hey we are all allowed a bad day it’s when it’s always a bad day that you have a problem.
Stop worrying!
Check your blood pressure & heartbeat. Bet you are stressed & it will show on this!

I’m trying to politely say if you had a major problem the first people to notice would be family.
Seriously!
This is so worrying for you, but you know that the worst thing about this is the fear of it being genetic; & that’s playing on your mind.
So try & not worry about this- as you also know stress & high blood pressure is a factor in dementia that makes any genetic predisposition more prevalent. I’ve started eating a diet suited to lowering my blood pressure ( just diagnosed with dvt lower calf - repetitive long journeys in car to sort aged mother out - it’s a long story .... scarily blood pressure 174 but heart rate 84, d- dimer only slightly elevated!)
Actually have within days reduced to normal range 138 - not brilliant but heck Rome wasn’t built in a day! It’s made me feel that I’m doing something positive for me - that doesn’t mean gym membership or more demands on my time!
So I recommend the foods that lower blood pressure, at least I feel full & as if I’m taking positive action - rather than being on a speeding train without a driver

 

[DesperateofDevon]

@Cc1 how are you?

 

[BluTinks]

Hello @Cc1 and welcome to DTP.
These sort of symptoms are possible due to lots of different things, only one of which is dementia. Did your GP do preliminary tests like blood tests to rule out things like underactive thyroid and vitamin deficiencies? If not, then they will probably organise this at the neurology appointment.

I think it very likely that the neurology appointment will be to give you a "neurology MOT" including memory tests, pen and paper tests and physical tests. From the results of these they will work out what to do. I doubt they will automatically dismiss your concerns if you pass the memory tests because not all forms of dementia affect the memory initially.

I think it very likely that the doctor would order an MRI and possibly even neuropsychology tests which test the functions of the brain in much more depth. After that you would go back and get all the results.

 

[BluTinks]

MRI & bloods plus Lumbar punrure
Not nice but neaded

 

[DesperateofDevon]

@Cc1 how’s life at the moment ? Been thinking about you, it’s hard not to worry & life becomes more surreal daily.
Please take care
Much love & hugs

 

[Cc1]

@Cc1 how’s life at the moment ? Been thinking about you, it’s hard not to worry & life becomes more surreal daily.
Please take care
Much love & hugs

That's kind, thank you, what a lovely board this is. Yes surreal is a very good description! Almost dreamlike state, as if nothing really matters or has a consequence, very strange. Feeling a bit bad as I've been extremely snappish the last few days, I'm usually a very gentle calm mum but I've had a few blowouts, probably from the stress of not knowing what's going on, and now my little 2yr old keeps randomly saying 'I don't want mummy to shout, it scares me'...knife in the heart! My 8yr old is being very overly affectionate too so I think he is needing reassurance.
I got the blood test results back, everyone was labelled as fine although I asked for a print out and my vitamin b12 was 179, reference range 145-914. I've been Doctor Googling (!) and it seems like in some areas that would be diagnosed as low as less than 200, particularly in view of the neurological symptoms, and would be treated with 1000iu injections three times a week etc etc. But seemingly where I live it doesn't get treated and is considered normal. Which is weird. But I can't be 100% sure because there was a note on the results saying since June 2018 there is a new way of testing and results may show as 30% lower. So maybe it is normal and equivalent to a slightly higher result, who knows (albeit clearly on the lower end of normal). I guess I was kind of hoping it would be something that easy to diagnose and treat! I'll raise it with the neurologist on Tuesday but will have to tread carefully lest it sound like I'm questioning the way doctors do their jobs! I know there is nothing so unpopular as someone who has self diagnosed and already decided on the course of treatment they need, haha!
I'm just getting a little stressed over work, it sounds like once I've seen the neurologist on Tuesday referrals etc could slow down a bit and have quite long waits, obviously at the moment I don't feel particularly safe to work in case I make a medication error or something, but I can't stay off forever with no diagnosis, and if it just turns out to be just stress then I think that will be seen as a sort of airy fairy reason to be off work, but equally I don't know how to 'fix' it and the symptoms are very real! It's a difficult situation. So that's an added source of stress, and if it turns out the problem is all down to stress, oh the irony!
I'm also a bit worried about the appointment on Tuesday, in terms of processing what is being said to me and getting the most out of the appointment/ coming away satisfied that I've explained the situation properly and am happy they are looking into it thoroughly, I've found understanding what people are saying and processing it a lot harder recently, so I automatically just make a vague noise of agreement because it's obvious an immediate response is required, and I'm worried I'll be sort of one step behind him through the whole appointment and only think of questions and concerns etc in response to what he/ she has said once I leave the room! I can prepare a few in advance but you sort of need to be able to think on your feet to address any issues raised during the appointment don't you! Unfortunately no one is free to come with me, husband is working and my mum will be babysitting. I'm worried I'll come away and feel like I didn't really get across everything that has been happening and have just meekly agreed to being discharged or something. I found at my GP appt I was so busy concentrating on doing a face that looked like I understood, that I didn't actually register half of what he said! I have a vague niggling feeling he mentioned going back to see him but I'm not sure. And if he did I don't know when! Whoops! So I'd better not do that on Tuesday!
Thanks again for checking in, it means a lot

 

[Cc1]

MRI & bloods plus Lumbar punrure
Not nice but neaded

I've certainly heard lumbar punctures are very unpleasant. Still, I'm happy to have all the tests going if they can find an answer! I just hope they offer it.

 

[Cc1]

Out of interest does anyone know if they ask questions to rule out other conditions, as a friend with MS pointed out that a few disparate health issues I've been having (I was joking to her that I'm falling apart, I've been frustrated that my hearing is deteriorating, I've been getting loads of muscle stiffness, as if I've done a huge workout when really all I've done is walk a bit more or a bit faster than usual, and pains in my feet, that type of thing) could point to MS, so whilst it's probably unlikely obviously now she's put it in my head I want it ruled out! But I'm wondering if the neurologist, though a specialist in MS too, will be so focused on diagnosing or ruling out dementia in my case due to family history and the reason the gp referred, and not stop to ask questions about balance and pain and pins and needles and vision and all that jazz? I'm just planning how to approach it but obviously if they routinely ask this stuff anyway then it's easier!
Thanks!

 

[Pete1]

Hi @Cc1, what a tough time you are going through. I would say try not to worry about work too much, your long term health is far more important to you and your family.

I'm really not surprised that you feel that you aren't taking everything in at your appointments - it sounds like you need another pair of ears in there with you - if your husband can't get time off could a friend or relative come along to support you? If that isn't possible take a note book along to jot down key points perhaps (and prepare any questions that you have in advance) - although I would envisage that anything of significance will be followed up in writing. I wish you all the best.

 

[DesperateofDevon]

Oh my lovely my heart really does go out to you. Honestly @Cc1 i do understand what it feels like, I had symptoms that you describe on this forum- & struggled to get a diagnosis.
So this is my advice, take your Mum & toddler with you to the appointment, get a school mum to collect & have a play date for the 8 yr old.
My toddler daughter was a regular at these appointments & doesn’t remember ever going!!!
You need your Mum with you, also having your child there focuses your mind! Seriously it sounds like a recipe for disaster but I packed her little ruck sack with all sorts of treats & small packets of pencils & a small note pad & my daughter just was absorbed in what was in the bag.
Also you & your Mum can tidy the consultants floor up after the consultation not worry about that until after you have had your time.

Yes, I firstly recommend listening to what they have to say. Then I give them a copy of my concerns
- list everything in bullet points

- ask about blood test results especially your clotting rates & any protein deficiencies for clotting.

- question away ( it’s your life!)

- if you don’t like the neurologist ask for another opinion via your GP

- if you are given wholly answers, time needed to assess question why ~ but give reasons as to how that stress exacerbates your symptoms.

- lumber puncture is horrendous & only rules out certain markers ~ definitely one of the last tests I’d go through again.

- MRI is a good base to work off, need one for future comparison


My experience was that no one looked at the clotting levels of any possible markers for blood clotting, protein c deficiencies etc. Despite several hospital admissions for issues that were misdiagnosed as migraines! My blood was twice as thick as it should have been. After the 2nd child went on the pill ..... because I sometimes got a headache it clouded the consultants judgement!
so I kept saying no it’s not a migraine I’ve had those & wouldn’t take the medicine the consultant offered! Thank god I didn’t!
So be who ever you need to be to get the answers you require.

I never considered dementia as a possibility & yet my symptoms were what you described, at one point I could remember my own telephone number!!
Got my names of children confused & that of my husband!

A retro diagnosis of M.E explained a lot but the stress of life & my Mum & Dad, husband working away & my own health led to symptoms becoming worse.

So yes I do understand, but this is your body, your symptoms & no one but you understand your bodies changes as well as you do.

As for medical intervention, it seems daunting with all that’s going on but try major changes in your diet. Seriously I have the body of a slob, but the readings of an athlete, well sometimes!!!!

So yes you get the rough idea, stick to your guns girl! Just don’t go straight down the vitamin route, trust me I did that one & supplements - expensive pee!
The lower your blood pressure diet, you get the general idea I’ve adapted the list of basic foods to fit in with mine & family tastes. I am the one pot queen when it comes to meals!! & yes I do have lazy cheats!!!

Anytime you feel overwhelmed by all of this, someone on the forum is here for you.
If you want to direct message me via the conversation button please feel free.

It’s a horrid stressful time & having had a similar experience I’m here for you. I do understand a little of what you are going through.

Main thing stop doubting yourself! You haven’t made mistakes at your job. You double check everything.
This is added stress! Believe me, please.
Take care & keep in touch
Xxxx
And very big ((((((((((((((hugs)))))))))))))))))