Memory problems

From what I can recall from years ago, we reckoned +/- 2% accuracy for tests like Hb, PCV (Packed Cell Volume - same as Haematocrit I think) and so on. We didn't do RBC counts routinely back then, as it was a dilute the blood (several times) and a person (occasionally me) counted the cells in a counting chamber using a microscope . No electronic miracle machines!

PCV was probably more reliable back then than RBC counts. We did have a machine to do WBC counts (white blood cells) - lyse the RBCs and then the WBCs could be counted. Coulter Counter.

PCV was always a bit of a strange one - make sure blood fully mixed (we did have a machine that rocked and rolled to keep anti-coagulated blood mixed - previous lab I used to have to try and gently mix stuff by gently rocking and upending samples by hand before sampling).

Then it's take a teeny tiny narrow tube that you stick in the blood which flows up by capillary action. Then you blocked the end using something a bit like blue-tack and we had a special centrifuge to spin it down, just the right size for the teeny tiny glass tubes.

Then you measured the percentage of red cells to plasma, we had a little doo-hicky measuring thing to use as all the teeny tiny tubes had slightly different amounts of blood in them.

Sorry @arewenearlythereyet, been on a bit of a trip down memory lane there!

I'm not sure what I've written will be any help to you, but if nothing else it might give you a laugh imagining me as a teenager working in a lab wearing a white coat and Scholls sandals (horrid to walk any distance in, but great if you needed to stand a lot).

Guess it's good they are flagging up your haematocrit and keeping an eye on it.

 

It’s nice to imagine everyone industrious doing their previous jobs.

I can imagine you now staring down a microscope ...did you have one of those clicks counter things?

...I won’t wax lyrical about my lab days ...but I also had a mini centrifuge and little tubes with a little agitator to mix the contents of the tube. For me it was proteins and amino acids rather than cells.

To up the stakes on the Scholls sandals ...in other roles I’ve had white wellington boots with steel toe caps and a blue hairnet. I kept the boots for gardening at home, until Mrs Sloth told me that reusing things was a great idea but I looked like a prat.

 

Certainly did!

 

Another update on my memory saga.

I saw the lady from primary mental health today (she is a mental health nurse not a psychiatrist)

She explained that the memory clinic won’t see me until she had done a memory screening test and checked whether I didn’t have a mental health issue. She also mentioned that this is what they have been doing for a year. So my GP seems to have been trying to follow the old referral process.

The depression and anxiety questionnaire was fairly basic and she confirmed that results clearly showed that I wasn’t depressed or suffering from anxiety.

The memory screening test was just 4 questions? Interestingly one of these was to list as many animals as you can think of in a minute. I did ok apparently “despite me mentioning a lot of insects”. I advised her that insects were actually animals which seemed to be news to her, and also the designers of the questionnaire apparently since “insects wouldn’t count”. I didn’t push my luck further but did mention that I had educated my 11 year old to be able to make the distinction between plants and animals .

Anyway, she said my results were not severe enough to recommend that I attend the memory clinic and be fully assessed.

I then asked that since it had been 8 weeks since I presented the symptoms, what should happen next?...she asked whether I had been booked for a scan and suggested that I should go back to see my GP..sigh.

I saw on the news the other night that all the local counties around us have had to chip in and bail out my local NHS trust since they have run out of money.

I’ll update if I hear any more ...but so far I think it’s up to me to keep a diary and then go back to the GP with further incidents. Hopefully the incidents so far with the occasional weird new vertigo symptoms are nothing to worry about.

At least they have had another test for my mental health that shows that this is not something for them to divert me on future merry go rounds.

 

That's a weird test. It's only appropriate for severe dementia. It would barely tell apart someone who is so feverish they are almost delirious, if at all. That still does not make someone on the worst day of the worst flu of their life able to work normally. Some of those tests a mouse could pass because of their form, really inappropriate.

The main issue with memory in ME is working memory. It's not about whether you remember what planet you live on or if you can tell a giraffe apart from a housefly, something someone near comatose would be able to pass, but about being able to apply the kind of working memory one needs to function in society. It's about higher-order memory, the kind that you need to function in a workplace or navigate the complexity of modern life but is not necessary at all for day-to-day "autopilot" stuff. I can easily cook recipes I already know and have done many times, but anything new and performance drops by 10x.

In my case I find that my memory is almost just as good with prompts, if I am shown things I memorized then I will mostly remember them and if I am given hints I will usually do OK. But accessing random memory just doesn't work, I need that initial association to remember most things. And I mostly remember things that I fully internalized before I was sick, I commit much fewer things to memory, likely in large part because my attention is so bad. Everything works from system 2, system 1 is in idle mode (or vice versa, can't remember which is the autopilot).

When you ask wrong questions, you nearly always get wrong answers. It's depressing that medical professionals can be so confused about such basic things. Frankly working with a group of well-supported patients and advocates, we could have built 100x better tools and guidelines if we had been given barely 1/10 of the money that's been wasted on useless research. Work with the damn patients, for F's sake.

 

Difficult questions that. It would take more than a minute just to list the humans I can think of.

 

Mini-Mental State Exam (MMSE)

Questions from page 4:

https://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/GetPdf.cgi?id=phd001525.1

also:

https://www.bgs.org.uk/sites/default/files/content/attachment/2018-07-05/mini-mental_state_exam.pdf

 

There's another one where for one of the tasks, the person being tested is asked to draw a clock face, put the numbers on and then draw the hands on at a particular time. Also name as many animals as you can being with "F" or some other letter. Or count backwards from 100 in "serial sevens". And remember a name and address given near the start of the test.

I think they've stopped asking who is the current Prime Minister as it's so hard to keep up, these days.

 

Memory testing is clearly not an advanced science. I had surgery that affected and could have damaged my brain in March. I was asked the following questions repeatedly after I woke up from anaesthetic and throughout the remainder of my stay in the hospital :

1) Do you know where you are?
2) Who is the Prime Minister?
3) What is the date?

I would struggle with number one three under normal circumstances but since I'd been waiting for the surgery for a long time the date was burned deeply into my memory. I would say that overall my memory has actually got worse in the weeks/months since the surgery, but I've never had any follow-up and no test was done beforehand to give them a baseline anyway.

Edit : I got my numbers muddled up!

 

Off topic, but I had a general anaesthetic in 2012 for a minor op.

As I was coming round in the recovery bay in the company of several other recently operated on patients, I heard a nurse repeatedly urging one patient to come round: Come on, Simon, come on, you can wake up now, come on Simon, time to wake up. Another patient across from me shouts out to nurse: I think his name's Robert.

 

It's 1986. it has been for a while, as that's when time stopped moving forwards and my life stopped.

It's relatively easy to remember things that are that consistent.

Apart from things like my name, or where I live, they can take a while if asked them out of the blue.

I've been through all of those tests, a lot of them aren't for memory issues but are 'checking' for neurological issues - like drawing the clock.

I ended up with a diagnosis of MCI, which seemed a bit harsh in the way it's intended to sound so trivial.

 

So....put the pie in the oven, turn on the timer - the oven buzzer goes off after 50 minutes - is the pie ready? No, I haven't turned on the oven!

Turn on the oven, forget to set the timer....is the pie ready - well, yes, but a smidge blackened around the edges, but still good.

But, for the love of whomever! My poor memory is quite the pain!

 

You'd think after thousands of years of dealing with us that ovens would have learnt by now that when we put something inside them we intend for them to cook it.

Either ovens are very, very stupid or Darwin may have been an idiot.

 

And not burn it!

 

Another instance of MEmory: the other day I told my husband 3 times about one particular test result.

In one day!

I have no memory of the first 2 times I told him.

He finally very kindly told me I had told him twice before that very same day.

ga!

 

Mystery solved.

Where did a bunch of my clothes go? It was puzzling and perplexing.

I walked by an ever increasing pile of laundry for a week before I realized, my clothes were under the bedding that needed washing.

Good grief!

I've done this before - been completely puzzled about where some of my clothes have gone - turns out they've been in the dryer for a few days.


Today, I asked my husband if he had taken something downstairs that I had organized to take down.

He said no he had not.

Guess I took it down, as we just can't train the dogs to do chores like that.

However, I have absolutely no memory of doing this.

Some will say...well at your age it's understandable you forget stuff.

But, I will counter - I had these same memory problems over 30 years ago with the onset of ME, and have continued with these issues the entire time with ME.



How is a pwME employable if they repeat the same info three times in one day to the same person, with no idea they have been repeating themselves?

Or lose several items for a week, while walking past them every day, and not noticing them?

Or doing other activities and having no memory whatsoever of doing them?


I already walk - try to daily, on the advice of a ME expert, and I've had CBT - not the coercive kind.

Neither of these "therapies" have improved my memory.

 

Sounds perfectly suited to the fast food industry (would you like fries with that - after ordering fries), or call center work where scripts are exclusively used(Yes sir, I understand you don't need any toner and don't in fact have a printer...So, how much toner shall I put you down for today?)