So frustrated and depressed now.

[Sweetpea46]

Guys,
i wont bore you with the same old thing, but i am a 42yr old physically fit police officer. but for the last 18months i have been seeing a neurologist who has passed me from pillar to post !. i have been tested then tested some more then tested again. the problem is the neurologist wont make up his mind. at a consultation 6 months ago he told my partner i had dementia. but wanted another test to be sure.

we went to this test and as you would expect scored low, and went back to the neurologist who at his last consultation he said that if i was in my 60s he would have diagnosed me 6 months ago but as i am only 42 he wanted to be doubly sure, but wrote to my work to say he thought i had a dementing illness.

he promised me he would send me to see another specialist and then offer a definitive diagnosis. so finally i was going to get a result. NO! WRONG, i have attended my last appointment who said they didnt know why i had been refered to them as they deal with mental health issues and not dementing issues and i definitely did not fit in their criteria and the said as i also appeared confused at times then they could not be sure it was dementia as confusion is not a symptom of dementia !.

the problems i have though is, the neurologist told me not to drive anymore after i got a little confused while driving with my family in the car, i am not allowed to go in to work anymore and they are now putting me on half pay which i can not survive on, i pretty much live to my wage and some months are a struggle with a full wage coming in.

because of his reluctance to diagnose me or give me any medication , my life (and mind) is crumbling around me. i, and my family could lose our home, if i cant keep up the payments and i wont have enough money coming in to even pay the bills.

i really dont know what to do

 

[leicester61]

Guys,
i wont bore you with the same old thing, but i am a 42yr old physically fit police officer. but for the last 18months i have been seeing a neurologist who has passed me from pillar to post !. i have been tested then tested some more then tested again. the problem is the neurologist wont make up his mind. at a consultation 6 months ago he told my partner i had dementia. but wanted another test to be sure.

we went to this test and as you would expect scored low, and went back to the neurologist who at his last consultation he said that if i was in my 60s he would have diagnosed me 6 months ago but as i am only 42 he wanted to be doubly sure, but wrote to my work to say he thought i had a dementing illness.

he promised me he would send me to see another specialist and then offer a definitive diagnosis. so finally i was going to get a result. NO! WRONG, i have attended my last appointment who said they didnt know why i had been refered to them as they deal with mental health issues and not dementing issues and i definitely did not fit in their criteria and the said as i also appeared confused at times then they could not be sure it was dementia as confusion is not a symptom of dementia !.

the problems i have though is, the neurologist told me not to drive anymore after i got a little confused while driving with my family in the car, i am not allowed to go in to work anymore and they are now putting me on half pay which i can not survive on, i pretty much live to my wage and some months are a struggle with a full wage coming in.

because of his reluctance to diagnose me or give me any medication , my life (and mind) is crumbling around me. i, and my family could lose our home, if i cant keep up the payments and i wont have enough money coming in to even pay the bills.

i really dont know what to do

Dear Sweetpea
I am so sorry your going through this, my husband was diagnosed over 2 yrs ago aged 52, that was after several scans and appts. The driving thing, well theres a few people on here who have massive knowledge about your rights etc so hopefully they will come on soon and help you with that one. My hubby had to take a test and to my shock he passed so dont give up on that one. You could try to apply for PIP the old DLA, unfortunately its a long drawn out process but may help eventually with finances, have you looked at working tax credits too if your slary has reduced, could your partner apply for a carers allowance too ?. Talk to alzhiemers uk they have people who will make a house visit and go through your options. as far as your mortgage and stuff is concerned i went to a gov approved debt agency to help me start talking to people like that and see what help/advice they could offer re the loss of wages etc. They were amazing and told me that they would make sure we didnt lose our house. sorry if this is all a bit of a ramble but just wanted to get back to you quickly. Please contact me if you have any other questions and I will try my best to help, but there are so many others here on TP with excellent advice that im sure someone else will come on soon to help
Suz x

 

[Jessbow]

get an appointment with Citizens advice- see what you may be able to claim.

Sorry you cannot return to work, must be hard

 

[Grannie G]

Hello Sweetpea

It might help you to phone the National Dementia Helpline.

 

[Sweetpea46]

thanks for all your super fast replies. my biggest problem is i am in limbo. the neurologist says one thing then changes his mind then changes it again and wont deffinitely say because of my age, but i am running out of options now. and for my last appointment i saw a doctor who told me confusion wasnt a sign of dementia so i dont know what is going on now

 

[Jessbow]

Confusion IS a sign of dementia as we all know, but I guess it can be a sign of many things, and confusion on its own would prob not lead to a diagnosis on its own.

 

[Oxy]

Have you had a CT scan which would hopefully show something up? Have they done your bloods? If vascular, have you got familial high cholesterol which causes atherosclerosis and hence possibly poor blood flow to brain. Has your INR been checked-is your blood the correct thickness?
Clearly no one right now knows what is causing your difficulties but just a thought as you are so young and fit due to your job alone.
I hope at least that your work could bring themselves to be just a little empathetic. I really wish you well and that the medics etc pull their finger out to help you in a timely manner.could your partner exert regular pressure on them to speed up the process. Such a difficult time for you-you have my full empathy.

 

[Sweetpea46]

Have you had a CT scan which would hopefully show something up? Have they done your bloods? If vascular, have you got familial high cholesterol which causes atherosclerosis and hence possibly poor blood flow to brain. Has your INR been checked-is your blood the correct thickness?
Clearly no one right now knows what is causing your difficulties but just a thought as you are so young and fit due to your job alone.
I hope at least that your work could bring themselves to be just a little empathetic. I really wish you well and that the medics etc pull their finger out to help you in a timely manner.could your partner exert regular pressure on them to speed up the process. Such a difficult time for you-you have my full empathy.

thats the problem, because ive been to see several different doctors now they all have their own opinions. and to say confusion is not a symptom to me is crazy, i only looked on google and it said it was so i would have hoped they would have known. i am sure because i have seen so many other people who all put their bit of an opinion in to the mix things are getting missed ! and no CT scan, but i had an MRI 18mt ago .

i can feel myself worstening and i am not receiving any medication or other help, and after 18mt i would hope they could diagnose me now

 

[leicester61]

thats the problem, because ive been to see several different doctors now they all have their own opinions. and to say confusion is not a symptom to me is crazy, i only looked on google and it said it was so i would have hoped they would have known. i am sure because i have seen so many other people who all put their bit of an opinion in to the mix things are getting missed ! and no CT scan, but i had an MRI 18mt ago .

i can feel myself worstening and i am not receiving any medication or other help, and after 18mt i would hope they could diagnose me now

Hi Sweetpea
I think we were lucky because my husbands gp had an interest in alzhiemers in younger people, then we were referred to prof Lyndsay who kept going with investigations, i wonder if you have a local memory clinic, and if you do whether or not they could help/suggest something, although they would probably insist on a gp referral, maybe you could ask for that. sorry if im suggesting stuff youve already done. I also got support from a local advocacy service who had a lot of useful info for me.
Good Luck
Suz x

 

[leicester61]

thats the problem, because ive been to see several different doctors now they all have their own opinions. and to say confusion is not a symptom to me is crazy, i only looked on google and it said it was so i would have hoped they would have known. i am sure because i have seen so many other people who all put their bit of an opinion in to the mix things are getting missed ! and no CT scan, but i had an MRI 18mt ago .

i can feel myself worstening and i am not receiving any medication or other help, and after 18mt i would hope they could diagnose me now

Hi Sweetpea
Also wonder if you have mentioned ' duty of care' to your work place, my hubbys work place found him a role that he could manage, albeit part time, but with PIP we have been able to manage. Are you in a union ? they will be able to advise too
suz x

 

[cragmaid]

Hiya....I'm wondering if you have a Union Rep at work? They certainly should be able to provide you with some support. I also think that it is time to go back to your GP and say..."Can we start again please?" After 18 months, many of the test results will be invalid as, if there is a dementia, things progress.
Confusion certainly can be part of Dementia...but not all confusion stems from Dementia....sometimes we create our own confusion simply by overthinking things. There are many illnesses with symptoms that match those of Dementia, and of course there are Dementias which cannot be treated with medication...not every patient is suited to the meds currently available.

Go back to the GP and ask for the tests to be started again.
and Good Luck.

 

[xyzdave]

hi sweetpea ,we were in a simalur posistion to you ,my wife was diagnosed eventually at 54 ,but it doesnt mean the doctor is right ,we still have a mortgage etc ,but get in touch with your union at work or c a b , ,as with myself i dropped my hours down over 3 years ,and as far as im aware {i was classed as a carer]they by law have to show that they are helping you ,but i am sure the same thing goes with the person who is ill,they cant just sack you because you are ill ,

 

[Lawson58]

Hi Sweetpea,

I really feel for you as I can just hear the amount of stress you are under oozing out of every word. Apart from the frustrations you are feeling because of your ill health, you also have one of the most stressful occupations anyone could have.

I think the advice to see the police doctor and to get help from your union rep is great and and I believe that the stress you are under is probably aggravating your medical condition. Even when we are well, stress can give us all sorts of problems and because of your illness, this must be so much worse for you.

I really hope that you find some answers in the near future.

 

[chick1962]

My husband was in met police, had the same thing as you,started with memory problems then gp wrote him off sick , pay reduced to half pay while waiting to be diagnosed, adviced not to drive but passed driving test at center now go yearly driving licence. In the meantime met ask husband to come back to work part time which he managed for a while until police doc declared him unfit for work permanently !!! Finally diagnosed 2 years in with early onset Alzheimer's and got dismissed by met and we had the union there as well . Life does go on though so don't be too alarmed we manage on a little pension he gets as met would not retire him medically and with his DLA and carers allowance we do get by . It was a stressful time for us awaiting diagnoses but you are still v young and the doctors want to be absolutely sure u suffer from dementia ! We had the same problems backwards and forwards, conflicting reports and so on . My husband was 60 when diagnosed and now 4 years later he is holding up well ! Our doctor at mental health put my husband on Memantine straight away even though no diagnosis as it helps to slow dementia down perhaps you could discuss this too and see if they are in favour of giving you mefication too. It will eventually all be sorted out so try and take each day as it comes


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[henfenywfach]

Hi firstly gps tend to check bloods as to rule out vitamin probs as certain ones can affect your memory and concentration..they then refer you to a consultant or memory clinic...youre not alone in being young and fit and suspecting dementia youd be suprised ..its no longer an old persons problem...the next root is memory test and ct scans..if scores indicate and scans show something then you know whats what but if they dont indicate anything then you will be left for a short period to see if theres any change...do you use headsets or radios on your shoulder?..in the force I mean?..I know that there has been press regarding radio waves..are you epileptic..or have headaches migraines?..not a medic just know a bit about how a relative was treated when ill in the police...they have welfare officers and union reps to help you...make them earn their money..I would...up to date test needed to see if any change...and if your getting nowhere then the loudest voice gets heard first...if you havent got it then thats a huge weight off but if you have..in my personal experience its not the end of your life..just a start of a different one...I know that probs sound patronising as youre prob frantic with worry...contact the alzheimers society they are very supportive...we tried and tried for a diagnosis and I took the system on and said no more waiting someone use their years of experience to help us..and suprise suprise I got a response..I wish you all the best and hope you get good news rather than disappointing

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