im confused!

[linda1scot]

Hi All

Its been a while since i posted anything so apologies for not being around.

A lots been happening with various hospital tests etc. i also had an emergency gall bladder removal a couple of weeks ago so that was just another 'hitch'.

anyway, im a wee bit confused today as to whats going on. on friday i went to see my psychiatrist for a follow up appt. he was lovely and said according to them they think i have early onset dementia but until all the scans etc are done they wont know for sure but he hopes i dont have it as many of you know i am only 45 with a very young family. (daughter has just turned 3). I also have an appt on monday with my 4th neuropsychologist and this will be our first meeting.

well, today i received another psychiatry appointment and i phoned them to say as far as i was aware the psychiatry dept had discharged me from their care as i dont have any psychiatric problems. The woman on the phone said she would check and call me back. she phoned a wee while ago to say i was correct but i would be receiving another referral appt and when i asked her what that was for she said the early onset dementia team.

as far as i am aware i havent actually formally been diagnosed so why am i seeing the early onset team. as far as im aware they only see you when you have been diagnosed. sorry for the ramble but my head is a bit up my ass at the moment and im shaking all over. not sure this thread makes much sense and apologies for that.

just confused and scared.

Hoping you are all well.

linda xx

 

[snedds57]

Hey Linda, I was wondering about you just yesterday as I hadn't seen you post for a while. I hope you are well after your gall bladder operation - you have been through the mill of late. I think you will learn what's going on once you see the brain man on Monday, and if you make a list of questions before you go that you need answered, that might help. Try not to worry too much until then...and try to enjoy your weekend as best you can. It can't do any harm to see the early onset team - but if you do have a diagnosis, at least you are in the system early and can get the support you need. Let us know how you get on!

 

[Sue J]

Hi Linda

Sorry you're feeling confused and scared. Just wanted to say Hi to you to - others are here.

Love
Sue
x

 

[Saffie]

Gosh - you've been on these tenderhooks for some time haven't you, I am so sorry. Sorry too that your physical health has been causing problems too. I hope you soon get some sort of diagnosis and the help you need so that you can move on with yur life' love and sympathy XXX

 

[bets daughter]

Hi Linda i hope you get some good news on Monday , you must be so scared , i shall think about you on Monday and keep my fingers crossed.Life is a ***** sometimes and you so young with a family its not fair .Take care with love Margaret xxx

 

[linda1scot]

hi guys

thanks for your much needed support and advice.

i guess i'll just have to ask tomorrows neurpsychologist whats going on and maybe ask her directly if i have been diagnosed with early onset.

will let you know tomorrow.

hugs to all

linda xx

 

[Izzy]

Hi Linda. I've often thought about you and wondered how you were doing. Sorry to hear about the gall bladder.

I think it's best to see the psychiatrist and ask him/her to tell you directly what is happening. I hope someone is going with you to help listen, take notes, ask questions and generally give you moral support.

Thinking of you. x

 

[linda1scot]

Hiya Izzy

Thanks for the advice.

Im going with one of my friends tomorrow - she's driving - ive been advised not to drive just now so i'll ask if she can take notes etc.

Hoping you are well and behaving yourself

Hugs to you

Linda x

 

[Loopiloo]

Dear Linda

Good to see you back on TP, I have often thought about you and wondered how you are.

But sorry you are so confused, I do hope you get some answers tomorrow and wish you luck.

My thoughts and love
Loo xxx

 

[Grannie G]

Hello Linda

I don`t know how I missed your post so too late to wish you well for your appointment.
However I`ll be thinking of you with everything crossed.

I suppose because of your age, your doctors don`t want to leave any stone unturned and are being extra cautious.

 

[Helen33]

Dear Linda,

Thinking of you this morning and hoping that you find the visit helpful. If you are diagnosed with early onset dementia then it would be best to get all the support possible as early as possible.

Love

 

[linda1scot]

Hospital yesterday

Hi all

Thanks again for your advice and guidance.

I saw the new neuropsychologist yesterday and it was yet another afternoon of questions and tests.

To cut a long story short, she re-did the addenbrookes test and confirmed that I still have the same problems as before re my memory. She also wants to do a lot more visual tests as she was concerned about my eye problems ie double vision etc.

I asked her about being referred to the early onset demntia team but she couldnt give me a definitive answer and just said that it couldnt do any harm! so iguess in summary, im not really any further forward although she did say there is a definate neurological problem which will need a lot more investigating.

Will keep you updated.

Linda xxx

 

[bets daughter]

Hi Linda i have waiting to see how it went yesterday, looks like its still a little way to go yet .Thinking of you take care kind regards Margaret x

 

[Dolly27]

Hi linda, I am 53 & been having investigations since last July , the memory clinic dr said I have early onset dementia, but the neurologist has , until now ,said I have mild cognitive impairment , basically an umberella term for all the symptoms I am experiencing , he said he didn't want to give definitive diagnosis until he had all the results of the tests I have had, and wanted to exclude any other possible causes; I see him again on Monday , when the plan is that he will have all results , so will be able to definitely confirm diagnosis and start me on medication .......the health professionals I am under have all been extremely supportive , and I so hope you are getting the support you need , & deserve , especially as you have a young family xxxx

 

[linda1scot]

Hi Dolly

Thanks so much for your reply and 'hi' from me

Its great to hear you have support from your health professionals, unfortunately i dont feel the same. all i seem to have had since last august is tests, tests, tests, mri's, more test and awaiting spect scan (no idea when that will be as hosp informed me the scanner was broken and dont know when it will be fixed! )

I am now on my 4th neuropsychologist whom i saw last week and she informed me there is a definite problem but wont put a name to it. memory tests were awful and i came out feeling like a real 'numpty' ! i have to see her again end of april for yet more tests! brain scan showed my brain has shrunk and not in keeping with someone of my age - normal? doubt it. anyway, wont go on cos i'll just end up writing a book lol !

I do hope you get an answer on Monday as i know how frustrating it is when we know there is something wrong and keep being fobbed off cos we are under 65! Its better to know than to keep thinking 'what if'.

do let me know how you get on.

Hugs

Linda xx

 

[Dolly27]

Thanks linda , so feel for you , can totally nderstand all you are saying...my round of tests etc began last July, & like you , I continually feel total numpty, one of my scans showed brain shrinkage like you, but it was the spect scan that gave the real confirmation something was definitely amiss, as it showed some areas of my brain have poor perfusion of blood & oxygen .......when I see neurologist Monday his plan is to start me on medication,part of me feels relief , part of me terrified, as it will be at that point I really have to accept this is really happening ....find it so hard that this time last year I was a very busy community sister, with a heavy workload, and now at times find it hard to concentrate enough to cook a meal...how did that happen ??? As for you having poor support, have you contacted your local Alzheimer's. Group?? Or asked at your memory clinic for a link person to support you ?? Or pos yr district nurse/health visitor if all else fails ??????? But it is difficult without that definitive diagnosis to get access to what you need...at the very time you are terrified, confused, anxious etc
Keep me posted
Love dee x

 

[Dolly27]

Just another thought, have you heard of admiral nurses ? They offer support for people with dementia and families , ( google them for details )....They have a help line on tues, thurs and Saturday , I contacted them initially via email, just poured it all out one night, had lovely email back, and emails continued back & forth until I plucked up the courage to ring , and was able to speak with Madeleine the admiral nurse I'd been corresponding with ...she has been very helpful & supportive to me, so maybe that's another avenue to try ??
Good luck xxx