Memory clinic appt- nervous

[Orangesandlemons77]

I have an appt next week for the memory clinic as have been having some memory problems, mainly short term.

I'm nearly 50 and was putting it down to perimenopause but the GP was quite worried and has referred me.

Anyone been possible with a relative or themselves? They have asked if DH can some along and I'm wondering what they might ask me / us.

They will likely just chat with you both about your life, how you are managing day to day, what changes you / DH have noticed and when they started etc. They will probably do a cognitive test (better not to look these up before because you're not supposed to practice!) where they will ask you set questions and score it. They should tell you what the next steps will be which might be a scan (MRI or CT) or further tests sometimes with a psychologist or they might want to go away and have a chat with the MDT (the team) to decide what the best way forward is.

Likely to be asking about history, any other medical issues eg medication that might impact memory, or anything like fibro that can impact cognition etc. Asking about examples of what you have noticed, and what changes over what time period etc.

It is helpful to go with someone who knows you as they could give their opinion too so that's great that DH will go too.

They might do a test-type cognitive assessment, Q&A test of which there are different types although mostly looking at the same thing. Usually quite quick to do. They might not need to do this but is an option.

Easy to say, but do try not to worry. If you do have issues there can be loads of reasons and often can be improved or worked around somewhat, for instance using memory aids, changing meds that might impact etc.

(I work with people with cog issues a lot as an OT in community rehab although not worked in memory clinic directly.)

Thanks! The GP asked me to keep a 'memory diary' of problems so I will take that along as well as a copy of medical summary from the app, so that should help.

I'm hoping DH will be helpful as well, not sure how much he picks up at times!

As @Primefungus suggested, they'll probably ask about medications that you may be taking. Statins, for example, can cause memory issues in some people. I know someone who was pretty certain an older family member had dementia, but it turned out to be related to the statins they were taking for cholesterol issues.

Has your DH noticed any issues with your memory?

I have the referral from the GP which says Aim of referral: To formally diagnose dementia and treat as appropriate. That sounds a bit worrying. My friend says it is just a term for memory problems though and does not have to mean e.g. alzheimers

I have had genetic testing and have a copy of APOE4, also had a CT scan which has shown mild global cortical atrophy. I guess I will ask them about this as well.

I was taking hrt and when I stopped I experienced memory loss where I could describe something or someone but not name them e.g I might say I saw that singer on tv .the one who lost a lot of weight..who sings rolling in the deep..but couldn’t remember the name Adele. I went to talk to the nurse at work as I was so worried but she reassured me and it improved after a while. Try not to worry and come back and let us know how things went,

Yes, DH has but I have had that for quite a while, he gets frustrated with me a bit at times, saying I 'don't listen' but it is more memory issues really.

From the dementia course I did, the neurologist teaching it was clear that people attending who are worried about their own memory tend to be absolutely fine.

It's the ones brought by a relative that are diagnosed with dementia - and they usually don't think they have any problems.

He explained it as 'if you have a memory problem, you won't remember you have a memory problem'

Thanks, yes I know what you mean, they did ask me already about HRT, I am on some

Wish you the best for your appointment next week @Orangesandlemons77 do let us know how you get on. Hope it’s just a perimenopause symptom x

I'm really stressing about this now, thinking they will either think I'm daft and menopausal, or tell me some scary news.

I would cancel but it is too late, I will go but feeling worried.

Sending you well wishes @Orangesandlemons77

Keep the appointment, hopefully in a few days you will have some good news and can breathe a sigh of relief. A weight will hopefully be lifted from your shoulders.

You are so young and the chance of it being sinister are really slim 🤞🏼🤞🏼

How is your hearing? Even mild deafness can cause all sorts of issues totally unrelated to dementia. It can though, if left untreated affect attention and lead to other cognitive problems.

I am very hard of hearing after meningitis in my 20s. Actually my employer noticed that I was lip reading a lot and struggling at meetings. I now have great hearing aids, and life all round has improved a lot - for me and those around me!

It's just a thought to add to others mentioned. Wishing you luck.

Thanks!

So I had the appt, it went Ok some of the questions where quite tricky though!

I do think it was easier for people who have read more for example reading out some long and difficult words

They said the results were OK, kind of on the low end of normal, but I had a scan which showed mild cortical atrophy and they are unsure if this is normal at my age (I wanted to ask them that but they also seemed unsure)

they are going to check with the other doctors and radiographer and see if I need a PET scan to check they haven't missed early onset Alzheimers (I have a strong family history and genetic risk you see)

So I will hear about that next week. Thanks for the support!

My hearing and sight are OK thanks, yes I had heard that also. Thanks

Hi @Orangesandlemons77 so glad you went to the appointment and I hope you get some results back really quickly. I have a lot of Early Onset Alzheimer’s in the women in my family, so I do understand the worry.

Do you have a supportive DH/family/friends nearby you who you can talk to about your worries?

Sending you a big squeezy hug x

Thanks yes I do. I'm just thinking over whether having the PET scan would be worthwhile given that there doesn't seem to be much treatment right now.

But it could put my mind at rest or if it was positive might be something in future, I guess I will see what they say and go from there.

They seemed very nice anyway which is good!

Sorry to hear you also have the AD in the family it's on both sides for me and I was quite low when I heard I had the APOE4 gene so I understand x

@Orangesandlemons77 I'm just thinking over whether having the PET scan would be worthwhile given that there doesn't seem to be much treatment right now.

Just adding my suggestion that there are two reasons to have the PET scan - the obvious one is to understand what, if anything, is going on so that when treatments become available you will have a diagnosis ready.

The second is that there will be a baseline if anything changes for you - the PET scan you receive now will provide a comparison.

I think it is always better to know, OP. You have been very brave and I am sending wishes for favourable results.

Thanks x

It's absolutely up to you but if offered I would have the PET scan. Treatment options are improving and although not curative currently the newer medications seem to be working better to slow things. If you did get a diagnosis then these meds seem to be more useful when given earlier. There are also a few clinical trials going on of similar medications too, which might be an option if you were interested.

The other thing of course is you might have the PET and it is clear that you don't have AD and then at least you don't have to worry about it for a while.

Thanks Yes I think I will take it if offered. It would probably be a long wait for the NHS but I do have insurance which would cover the scan as well so might be able to have it relatively quickly.

It's made me think, we would not turn down a scan for e.g. MS, or cancer even though in some cases those can have limited treatments.

But if I mention this to close friends or family they say "Oh, I wouldn't want to know".

I'll post back as they are ringing me next week and say whether they are going ahead with the scan or not. But thanks this has been useful and helpful.

They are advising I have the PET scan. Just going to try and book it in now. It will be months and months with the NHS, so using my cover with Benenden.

Thanks for letting us know@Orangesandlemons77 .
Great that you have the cover. Now you'll know where things stand, and the results may well be favourable.
x

I think that sounds like a good idea - why wait and prolong the anxiety when you can get it done quicker.

I have been following your post and understand how frightening this all is. I found out through a 23 and me membership that I have a copy of the APOE4 gene too. I’ nearly 50’s and some days it hits me like a ton of bricks and nothing is very comforting when I read the various research on what this gene means and determines. It can be very hard to stay positive.

Let’s hope that you get the scan and results quickly and know what you’re dealing with.