Worried about my memory: Ever since I was... - MPN Voice

MPN Voice

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Worried about my memory


Ever since I was diagnosed with PV 18 months ago I have had ever increasing memory problems. I won't talk to anyone on the phone because I can't find the words I am looking for and I have to ask my husband what I need to say. Also at times of added stress I always lose my train of thought and forget what I was talking about. As for names, forget it. If I see someone on TV I sit for hours wondering what their name is. I don't know if this confusion is part of PV, a side effect of taking the Hydroxy or, heaven forbid, the start of dementia. I wonder at times if I could have had a mild stroke? I cannot stand the not knowing how so I am going to ask my consultant when I see her next week. Just wanted to know if anybody else has these problems?

17 Replies

Hi Jilly, that is so hard for you. Just want to encourage you that my sister-in-law has been going through similar and it seems to be absolutely stress related....the more stressed she gets because she is worrying about her forgotten words, the worse it gets....a catch 22. Wise to get checked out by your doctor, of course, though. She was recommended to paint, walk, play piano, see friends, do things she actually enjoys....and things are definitely improving. Best regards, Tinkerbell13

Hi Jilly

I have E.T and also have memory problems. I cant find the word for everyday things and in a conversation if i stop to think of a word i end up forgetting what i was even talking about!

I have been having optical migraines which last up to 30mins, and although i dont black out as in "faint", i cant remember what i said or did during it. I mentioned these to my haemotologist and he referred me for an MRI. This showed "slight changes" which the Neurologist said probably wear and tear due to age. My Haemo is being more "careful" (cant think of the real word i want to use here) and wants my platelets down under 400 just to be on the safe side as these episodes could be T.I.A's.

I do know that my memory and conversation problems were there before starting hydroxy, so i wonder if it is the E.T that started them. It now feels like there are vast holes in my past that i cant remember. When i mentioned it to my haemo, i did say i was scared i had dementia. Its frightening and sad, i used to have such a quick wit and crystal clear memory, but now i sometimes have to describe what im trying to say and ask the person what i mean!!

I think mine is worse when stressed. In very comfortable and familiar situations it seems to be better. Im glad you wrote this post, i have been wanting to ask the same thing myself for ages.


jeaniej1x in reply to jeaniej1x

Oh and i forgot to say (typical)

I now have a wipe board with "things to do" on it and also i have a book that i write things in. Like what i want to ask during phone calls and what the answer was and the date i rang etc. My only worry with that is that it will make my memory lazy and i will forget how to remember things? But anyway, its working for me at the moment.


Hi Jeannie, your first posting is me to a T. I am actually getting embarrassed about losing my train of thought. I have now started to start conversations with an explanation that I may have trouble communicating and why. It amazes me how many "branches" MPN conditions have. Good idea about the white out board by the way


Hi Jilly, yes I get this as well, and quite often I have to describe things in detail because I can't remember the proper name, like I will say 'you know, the thing you put food in to drain water' I am describing a colander! It doesn't happen all the time just now and then and I just say it's my ET brain, I don't stress or worry about it as I feel that will make it worse, but that is my coping mechanism and I appreciate that it will be worrying to other people, have a word with your consultant and see what they say. In the meantime, just remember that you are not alone in this, and try not to worry too much about it. Best wishes, Maz x

Ha! i also explain and appologise before starting conversations that i may get confused or forget words! It is embarassing and i try to laugh it off at the time, but it makes me sad that i have changed. People who have known me for a long time have noticed that i am "slower" than i used to be.

Most of the time i feel as though im in a "dream state" or "bubble". Im sure this is the Hydroxy, i started on 1 capsule a day, then 1 Monday to Friday and 2 on Saturday and Sunday as the platelets were coming down, but slowly. I think this might be increased next Monday at my Haemo appointment.

Get a little white board and write things on you need to do. Its quite satisfying wiping them off when they are done. Eeh, little things..............Ha! :)

Hello Jilly, I was diagnosed with PV late december 2016. I had really bad memory problems and "brain fog" for six months or so before that (together with all the other ususal symptoms) I had several venesections and was prescribed Hydroxy, initially one daily then changed recently to mon to fri and 2 sat/sun to try to reduce platelets. My memory problems don't seem as bad as they were last year but seem to worsen if I become stressed. I have to rely more on "prompts" by writing things down. Thank you for posting! Maggie-ol

Hi I have MF and my memory is shot to pieces. I loose my ability to finish a sentence then forget what the conversation was about. I was diagnosed last year and I'm on the watch and worry list so no medications at the moment. I didn't think I was as stressed as I was at the beginning, I can go whole days without thinking about it but my memory is worse than it was.

I'm so glad you posted about this problem maybe between us we can find a solution.

Janet x

Oh yes - that's me! I do get worse when stressed. My husband thinks I'm making it up. He'll say something about somewhere we went on holiday a few years ago and I haven't got a clue where he's on about 😳. I was replying to a post on here last week but ended up deleting it because I couldn't think of the words I needed to use. I often feel as though I'm starting with dementia. I have post it notes up in the kitchen to remind me what I'm doing. I put reminders on my calendar as well, otherwise I wouldn't have a clue where I should be.

It's reassuring it's not just me!


Hi Hun! My memory is the same! I forget names and things and find it so frustrating! Especially as I'm only 41! My family get so frustrated with me as I forget conversations I've had and things I have been told!

Stress is definitely a factor as I am worse when I'm stressed and it's definitely a good idea to write things down!

In recent years I have taken up amateur dramatics, which I had forgotten I loved at school, I spent years walking around in a bubble, kind of on autopilot and the acting and learning lines and singing really helps with my memory plus it gives me something to focus on!

I feel for you and every one else on this site.. I am not on HU just aspirin for now. But I do have problems with wanting to say what I really want to. Sometimes it seems like I say the opposite of what I want and quickly correct myself. Like hot vs. cold or tall vs short. Never had this before ET.

I have less stress now in my life than I used to. So I can't pin it on that. I am now semi retired . I do think it is the blood disorder we have. Something we learn to live with but I try to make each and every day meaningful. Blessings to all.

Thank you for writing about this problem. My memory is so bad these days. Somedays it is better than others. I thought it was just old age, I am 75. I think though PV is a big componant. I am seeing my consultant tomorrow and will ask him about it as I can see from all of the other posts that it is an issue for many others and with all ages. I have had a couple of mild TIAs over the last 2 years and had visual migraines. Thankfully I am no longer troubled with these since venesections and hydroxy. Though the heatwave and exhaustion brought on a visual migraine. Has anybody found a vitamen or anything else that has helped? Back to the crossword and suduko I think, that was my new years resolution but I have let themslip. Be well. Mal x

Hello Jillydabrat,

I am sorry to read that you are struggling with memory, it can be very distressing and a worry I have ET and have the same issues and like you they are worse some days than others... and stress makes it worse, based on what others have said here it is because of MPNs. I hope it eases or at the very least that you have more good days thsn not.

All the best


Hi Jilly

My husband's case is evidence that memory problems are definitely a symptom of PV. Before he was diagnosed and before any treatment he was becoming very absent-minded. It was his short term memory that was affected therefore. He would forget his phone, his keys etc. He would inevitably have at least one false start when leaving the house and would be in and out of the house collecting the stuff he'd forgotten. This has improved dramatically since his venesection (he had about 6-8, now suspended at present) and daily aspirin. Memory loss as you and the other posters describe is very similar to my own foggy memory problems (non MPN) which I think are connected to trauma and stress in my life. Advice to stop fretting about it is good, as it definitely makes it worse. It has become part of who I am and my family and colleagues know not to rely on me for names, dates etc. I have found that when you 'give yourself permission' to have a symptom, it immediately starts to get better. Roll with it!

I don't know if it's too late to comment on this post but I called my Drs. office to make an appointment to see her and when the receptionist asked me why I wanted to see the Dr. I could not remember the reason, very embarrassed. Told her I would call her back as soon as I remembered the reason. Several hours later I finally remembered and had a good laugh with her.

Sometimes I can't speak, it's just too hard to think. Always write down beforehand why I am calling someone so I can try to be clear. I think it is lack of blood flow to my brain.

Diagnosed 3 years ago with ET. Started hydroxy (1,000 mg a day) 7 weeks ago and have had 3 magnificent days where my brain started working again (not in a row). Spent one day calling friends to tell them by brain had returned only to have it go away next day.

Platelets are 1/3 of what they were and am looking forward to more brain cells returning.

I try to start everyday with beautiful images, like Earthporn. Thank you for bringing up this subject and know that you are not alone.

Hello just scrolling through and this is me to a tee..

I have ET and used to remember dates/ex families from work( im a nurse) but now i forget words at least a few times a day. I make lists about

lists on my phone and loose my

train of thought constantly. When people are telling me things my mind wanders and then i forget what they have been on about!

Like most i was scared it was dementia.. and was going to see my GP.. but after reading this thread i think i’ll waitand see..

Thanks xx

I hope from reading all the replies that you will, like me, be relieved that you are not losing the plot, you are just experiencing another of the symptoms of this annoying condition. I can handle the brain fog now but I still find it embarrassing and frustrating. Hope all these responses have eased your mind a little x

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