Do any of you find you struggle to find words? - MPN Voice

MPN Voice

10,445 members14,398 posts

Do any of you find you struggle to find words?

netty64 profile image
20 Replies

I have noticed lately that I often struggle to find or say a word. It's like I can see word but cannot voice it.

Written by
netty64 profile image
netty64
To view profiles and participate in discussions please or .
20 Replies
Swede profile image
Swede

Yes, sometimes a bit. It is like a delay but not a too long delay

Pte82 profile image
Pte82

netty, look into the TTFD form of thiamine such as Lipothiamine or another called Sulbutiamine. Always consult with your health care professional before using any supplement.

nootropicsexpert.com/vitami...

wendycu profile image
wendycu

Yes, I have for years. It is bad when I am tried. People and family just look at me or laugh. I tell them it’s because I’m tried and tell them about my blood. They say, “Oh, sorry”

hunter5582 profile image
hunter5582

There are a number of reasons that someone can experience anomic aphasia, which sounds like what you are describing. It can be a side effect of some medications, due to the effect of aging on the brain, or the result of an event in the brain. If you have noticed an uptick in this issue, it is something to follow up with your care team about.

Please do check into it and let us know what you find out, I expect there are many more in the forum who experience the same thing,

netty64 profile image
netty64 in reply to hunter5582

Thankyou I will 😊

Uzza profile image
Uzza

Yep, it often goes hand in hand with fatigue.

Cheers,

Uz

Ovingite profile image
Ovingite

Hi netty,Yes I can relate to that. I noticed that it appeared to worsen as my hydroxycarbamide dosage increased. My hemo suggested reducing dosage from 12pw to 11pw, which seems to be having some effect. Will review after 6 months to see if we can go to 10pw,but that depends on how bloods respond.

Take care

John

Ebot profile image
Ebot

I’d definitely chat to your Haem or GP about this as a matter of urgency. I too can identify with this when I’m fatigued but as a first off, it would be good to establish there is nothing else that might account for the fact that you are experiencing this struggle to find words (and weren’t before). Let us know how you get on.

netty64 profile image
netty64 in reply to Ebot

👍

Minu68 profile image
Minu68

I have this! Found myself trying to explain tomato the other day... Knew it but couldn't find the actual word....Fatigue is what I relate it to, am pleased you brought this up, interesting responses to consider

Can't find the word lm looking forward this happens to me all the time and definitely related to whats going on in my body and the mefs lm taking. Thank you fir sharing this l thought it was my age but l believe there is more to it than that...

Tylerdog1 profile image
Tylerdog1

Yes - this happens to me frequently - just cannot think of the word and get a completely blank mind.

Mazcd profile image
MazcdPartnerMPNVoice

Hi netty64, yes this is one of the symptoms I had before I was diagnosed with ET, which is why I had tests, and I have had it ever since, I was diagnosed in 2003, it doesn't happen often, just now and again and like you, I can see the word but can't seem to say it, very strange. Maz

netty64 profile image
netty64

Thankyou glad to know I'm not alone

soisew profile image
soisew

Yes I do. If I have some with me to remind me of what we were talking about I remember what I was going to say. I thought it was just me. Sorry you have that problem but I am relieved it is not just me getting senile.

Tippman profile image
Tippman

Hi, yes, I used to get this but not so much anymore. I have had ET for 10 years. It seemed to improve a couple of years ago when I progressed to PV and started having venesections to bring my hematocrit under control

JaK2ET profile image
JaK2ET

I'm intrigued by the idea of being able to "see" a word but being unable to "voice" it. For example, if you needed a word to answer a crossword clue or add to a "Scrabble" game, would you be able to write the word down or arrange the letter tiles to form that word (even if unable to say it aloud)?

Or is it something more like what my late father had (even before his stroke): he could often tell you five (sometimes complex and involved) facts about a person, object, or institution but could not name the person, object, or institution - we had to guess it or help him find it from what he did say, as in a general knowledge quiz! Clearly parts of his memory still worked well but there was something wrong with the retrieval of names ...

Minu68 profile image
Minu68 in reply to JaK2ET

I know the word I want to say, but don't 'see' it in word form in my mind. So for me I don't seem able to think of, or find the word for some common thing, a blank space where I know it should be. It's strange.

PrinceA profile image
PrinceA

Hi netty64, yes I have this as well, i mentioned this to my primary doctor on my visit and he thought thats because English is not my first language . I've noticed this in last few years but seems like it could be related to MPN.

runnerbird71 profile image
runnerbird71

I have the same problem and I just end up stuttering til I get it out. It was so bizarre the first time it happened. I knew my mind was different at this point because I felt like I’ve always been someone who can get out what I’m trying to say. Kinda scary actually yet woke me up to reality of this cancer🙈

You may also like...

Do you have any supplements you think helped JAK2+ patients?

are not advisable for people diagnosed with ET, can anyone attest to that? Thank you so much in...

Pegasys struggles..any tips?

weekly 135mig injections and find that after 2 injections I’m really struggling with the side...

How did you find out that you had PV?

not started to have stomach problems, I am not sure at at what point my PV would have been...

Christmas Cards, helping to spread the Word.

On enquiring with MPD Voice I was delighted to hear that they hope to have Christmas Cards, specific

Do you recognise these symptoms

I have recently found this forum and it is wonderful to hear back from others who have ET and their...