Memory problems

[alktipping]

could the work load that you completed be very routine for you the kind of thing you might be able to do on autopilot for instance. my days seem to be mostly the same so I can actually forget what day it is happened twice this week already. more seriously many routine things just don't register in memory the way unusual events do .

 

[NelliePledge]

Maybe your current workload is too much for your current capacity if you’re juggling too much different stuff it’s easy to lose track of an area.

 

[arewenearlythereyet]

My memory has been on an inexorable decline for years.

My Lyme doctor prescribed an anti-viral used for memory issues in Parkinsons and MS patients, but I had a terrible reaction to it, and I tolerate most drugs; I lost an entire day on it because I could not keep my eyes open and kept wake-dreaming. My ME/CFS doctor is putting me on an Alzheimer's med.

I am not hopeful.

Some of these drugs seem to do more harm than good don’t they? I hope you find something that works @duncan

I’m coming to the conclusion that I had better see my GP if I get another episode. I’ve been thinking of getting my iron and TSH rechecked...not had any blood work since 2013. I’ll have to do a lot of prep though ...to avoid the eye rolling, tutting and looking away etc. I at least need to get the new symptom logged on the notes. I suppose.

 

[arewenearlythereyet]

@arewenearlythereyet

I do have memory issues of the usual sort ( word finding etc), lack of clarity in thinking, but had an experience a week ago today that threw me somewhat, not so large as yours but unusual for me.

I had an appointment with my ME doctor who first checked how I was doing with supplements. We covered the one he had introduced last time, and then he asked me about another he had advised. I had no recollection of it at all, felt very confused, embarrassed etc. He was working from his notes or I might have thought he was thinking of another patient because I have never been conscious of totally forgetting something like that.

Not only had I not been taking it but I didn’t remember buying it or even recognise its name. It was a blank. When I got home I searched through my supplement basket, found it and it had been opened, and I found the order on my Amazon account. I counted out the caps, 56, so I had taken 2 a day for 2 days. Then I stopped. I had no memory of that.

I did actually develop a severe chest infection at this point needing 2 lots of antibiotics to get on top of it, and I decided to stop supp 1 till on top of the infection but supp2 never reappeared in my mind. I have put it down to illness on top of ME for the time being.

That does sound similar @Binkie4

It’s very disconcerting isn’t it? I normally have a spark of recognition and then over around an hour or too the rest of my memory colours in what I’ve missed...this is still a blank like amnesia.

I’ve just looked back in my symptom diary. When I wrote the piece of work I was slap bang in the middle of a good patch (no PEM for weeks, no infection, no heart palpitations, stable cognitive symptoms and pain). On wed when I couldn’t remember, I had just come out of a big crash 2 days before but nothing more out of the ordinary than that (I crash every 2-5 weeks). However this is one of the biggest crashes I’ve had for over a year...so?? It does feel, like something new though.

I’ll remind you to keep an eye on it if you forget and I remember at least we have this thread to remind us what happened in a months time.

 

[arewenearlythereyet]

@arewenearlythereyet

I don't know if I can add anything, except to include some of my examples:

I forget words; do not badly with reminders, but for years have recounted something I've read to my husband, who then tells me I told him about this same reading 6 months ago. I've done this several times.

I am very vague when trying to recount interesting news items...can't recall much of the details.

I have bought the same book more than once - maybe 4 or 5 times.

I can't recall simple sequences of directions.

Slightly complex new learning can be very problematic.

I forget things like have I turned off the kettle, moved the laundry to the dryer etc.

I've left the stove top on more than once.

I have heard that if you forget where your keys are that's OK (except you can't find those darned keys!); it's when you forget what keys are for - that's a problem.

Thank you @DokaGirl no these all sound very familiar....Mrs Sloth is forever reminding me that she has already told me something ...trouble is she suffers from hypothyroidism and has memory problems of her own ...can cause arguments in our house. I appear to be worse than her since she does have a supportive GP who gives her stuff to take and tests her regularly. This annoyingly means I have to concede most of the time.

I agree definitely on the learning new stuff ..this is why I took a step down in my career and found a job that uses 99% of what I know already. I had a session with my boss the other day and we had to fill in one of those personal development plans .....she kindly helped me fill this in so I didn’t have to learn anything new!

 

[arewenearlythereyet]

@arewenearlythereyet My brain symptoms in ME are an inability to learn and retain information. I can no longer take in a lot of information, whatever I do learn I forget quickly. Also I find I need people to remind me about something so that I can actually remember it. So I do have difficulty retrieving stored info as well. I get mentally exhausted quickly and I can feel my brain shutting down and wanting to rest.

Just the other day I asked a question on the forum and I have a vague memory that I asked this same question once before on the forum and I think I was given an answer by someone. This is what I mean by not remembering even though I had learnt it. Very frustrating.

I understand your not wanting to see your GP, I wouldn't want to either but you do need to see a doctor about what happened. Although I have memory problems I don't think I have experienced anything like what you experienced.

Lovely to hear from you @Rosie

Yes I think you are right ...this feels like it’s moved beyond my normal issues ..I will book in an appointment ...now what to say

 

[Binkie4]

Good luck with your doctor’s appointment @arewenearlythereyet.

I would be a lot more troubled by my issue if I hadn’t been so ill at the time, involving a rapid response unit being sent out to do a first assessment and then having a difficult consult with the doctor I saw for the second antibiotic. I have a very depleted immune system, and a heart issue, so it was important that the antibiotic decision was correct. I heard shortly after that she had been let go. It feels as though this issue never got filed in my memory but I don’t know enough about how memories work.

 

[duncan]

Sorry to hear about this; hope it's not Alzheimer's!

Take care.

What a very kind thing to say! When I said I was not hopeful, I meant I was not hopeful the meds would help. I post less these days because I make more mistakes when I write - one of those is not anticipating how readers will interpret what I right, and what I omit.

My understanding is, like MS and other neuro-degenerative diseases, Alzheimers is an umbrella term for a cluster of downstream brain events that are poorly - albeit partially - understood, at least in terms of cause. Even brain plaque - once considered diagnostic, is in many circles no longer considered requisite.

In my own uneducated way, I think we either have different sub-clinical infections which attack sometimes discrete parts of the brain, sometimes similar and overlapping parts, and so one common overlapping area would be memory domains. Could be autoimmune or other immune dysfunction, who knows? For some, like channelopathies or thyroid disease or whatever, it will fit into neither category, but we share the same mental window dressing. I think the way forward may be one brain autopsy at a time.

Yes hypothyroidism occurred to me too ....mainly because when I was tested during diagnosis years ago my TSH was a little in the low side. I doubt I’m low on b vitamins due to the regular supplements I take due to folate deficiency (due to other meds I take). I certainly haven’t changed anything I take for around 2-3 years.

I am hypothyroidal, not sure what role it plays with memory. I would wonder if the hypothyroidism is a downstream effect of something else. In my case at least, it may be.

Maybe our brain issues cannot be ascribed to a single cause.

I forgot my daughter's birthday. She is an adult, so no harm done, but I forgot not only the day, but the month, and when someone told me, I still could not remember. You forget the month your child was born, that gets your attention.

Some of these drugs seem to do more harm than good don’t they? I hope you find something that works @duncan

Thank you. Yes, some are more dire than a crap shoot, but we have to try, yes? It's a good goal, finding that one drug or supplement, or combination, that disinters us.

 

[TiredSam]

Anyone else have this?

I have all the other normal ME stuff you describe, but not the working on something for a day and being unable to recall anything about it thing, even when prompted.

 

[arewenearlythereyet]

Just a quick thank you for everyone who took the time and energy to share their experiences.

Based on this I did decide to book a GP appointment this afternoon. I took Mrs Sloth as my witness and I managed to get the best GP there. GP seemed to take it seriously and has ordered a load of bloods and booked a visit to the memory clinic (just in case).

At first I thought this clinic sounded dubious ...my first thought was ...I hope this isn’t where I receive some neurolinguistic programming and a new memory. Checking online afterwards it looks ok.

Thanks again everyone. I appreciate everyone’s support. I’m sure it will be nothing to worry about but best to get this checked.

 

[Wonko]

Based on my experience with my local memory clinic, no attempt to reprogramme you is likely to be made.

It can be mentally and cognitively exhausting doing the basic tests, so I'd advise taking someone else with you if you can.

This is by design, one of the things they are looking for is executive function, your ability to keep on task.

Even though they say an hour it can take 2, so whoever goes with you should take a 'book', or other means of entertaining themselves.

 

[arewenearlythereyet]

Just a quick update...I’ve had all my blood test results back...all normal apart from low red blood cells/haematocrit. They also called me in for an ecg which was also normal. I thought I would then receive the letter for the memory clinic as advised, but no ..apparently not ..I’ve now received a letter to be assessed by a psychiatrist

I rang them up ..and apparently I live in a special area where there is a new unique mental health support service via the NHS. The weird thing is that they won’t refer me to the memory clinic until they have assessed me to see whether I could “benefit from their help”.....sigh ...this will take all of my politeness and control not to tell her exactly what I think of her profession, MUS and underhand cost cutting.

Wish me luck ...I’m taking Mrs Sloth with me as a witness ...hopefully we won’t both be carted off to some pointless pottery class never to be seen again.

I find it especially disturbing that my GP didn't advise me beforehand that this is a prerequisite for getting a memory assessment. I suspect that this is news to him and this new mental health unit has got its claws into the memory clinic. Either way it feels like mental health is being used as an excuse to delay diagnosis and treatment. What’s also weird is that they have mental health people at the memory clinic so why see another one before hand?

Oh well, I will take my original ME diagnosis and the tests that show I’m neither depressed or suffering from anxiety...all on my record of course.

Perhaps one day in the next couple of months I will get a memory assessment for my lack of memory symptoms instead of this pointless merry-go-round.

 

[chrisb]

As Flanders and Swan sang: "Oh, it all makes work for the working man to do."

If psychiatry can be classified as work.

 

[Binkie4]

Really odd @arewenearlythereyet .
My memory is better than Mr B’s despite my issue that hasn’t recurred.

So he decided to consult our GP who immediately referred him to the memory clinic where he passed the memory test with flying colours. Was just about to be discharged when the signing off doctor decided to do an MRI and a follow up “ to be on the safe side”.
No referral or suggestion of a psychiatrist. He is accepted as a valid witness to his own experience without his mental health being questioned.

Can you talk to your GP about this ? It just sounds odd, out of place. Does your GP know that this is happening?
Best of luck.

 

[Wonko]

Rookie mistake - turning up at the right hospital at the right time means you may pass a memory test (but oddly not turning up means you get disqualified and sent a nasty letter)

 

[ladycatlover]

I rang them up ..and apparently I live in a special area where there is a new unique mental health support service via the NHS.

I wonder if this is a preliminary meeting to put you into an IAPT group?

 

[arewenearlythereyet]

I wonder if this is a preliminary meeting to put you into an IAPT group?

This is what it looks like to me too

I have a policy of avoiding these people ...sadly I’m in a catch 22 it seems. I guess I need to go through this nonsense, take a witness and try and jump the hurdle. If I challenge it I’m opening myself to be judged as having paranoid/delusional beliefs. I might try and ring my GP just to check he is aware though as @Binkie4 suggests.

I just hate that our hard earned tax is being used for this nonsense.

 

[mango]

I have a policy of avoiding these people ...sadly I’m in a catch 22 it seems.

Avoiding them, if at all possible, seems like a very sound policy to me. I'm so sorry they have put you in this difficult situation It's horrible that we/pwME so often have to expose ourselves to the risk of "out of the frying pan into the fire" every time we seek medical care Please be careful

 

[ladycatlover]

all normal apart from low red blood cells/haematocrit.

Just went back to your earlier post to refresh my memory.

If your haemoglobin is normal but your RBCs and haematocrit are low surely there's something a bit weird going on? (did you get RBC count as well as haematocrit or did they just assume low RBCs from haematocrit low?)

It's nearly 50 years since I worked in a haematology lab, but that result just seems strange to me. Assuming that your Hb is normal.

 

[arewenearlythereyet]

Just went back to your earlier post to refresh my memory.

If your haemoglobin is normal but your RBCs and haematocrit are low surely there's something a bit weird going on? (did you get RBC count as well as haematocrit or did they just assume low RBCs from haematocrit low?)

It's nearly 50 years since I worked in a haematology lab, but that result just seems strange to me. Assuming that your Hb is normal.

They did do a full blood. It’s a bit weird...but seems to have been dismissed 3 times now looking back at my blood tests over the last 6 years. It’s fairly consistent at

Rbc = 4.41 (4.4-6.5)
Haemoglobin = 136g/l (130-180)
Haematocrit = 0.399 (0.4-0.53) below reference limit

My haemoglobin has previously been 131 and haematocrit 0.381 with the same rbc count when I first got tested a few years back...it seems I am borderline since each time they flag haematocrit being below range there is no further action required on the report. I mentioned it briefly to the GP last time I saw him but he didn’t seem overly concerned.