I am 40, I have PV and was diagnosed 7 years ago, I take aspirin and have venesections no other treatment.
Recently I have become increasingly concerned about my short term memory and have always put it down to PV and brain fog until yesterday when I mentioned to haematologist who seemed to think the two are unrelated and that I should speak to gp and possibly see a neurologist.
An example of my experiences are last night I sent a picture message if my son to my mum. This morning I spoke to mum on the telephone and she apologised for not replying to my message. I had no idea what she was talking about until she explained and couldn’t remember sending the picture had she not have told me. This is happening more and more, I would love to know if anyone has similar experiences or if this is a completely separate to my mpn. It honestly feels like I am drunk 🥴 and I hate it, it’s worrying me now.
Any thoughts, feedback or experiences would be really appreciated.
Many thanks
Andrea
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Foss33
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Hi Andrea, absolutely yes. It is worse when my anaemia is at its worst or when I'm nearing a venesection. I am 45 & have the same treatment as you. Its just short term and not important stuff i tend to forget. I'm used to it now, as are my very amused family. It is a recognised symptom of anaemia and as a psychologist, I can understand how it would ramp up when I am fatigued. Hope that helps. Jo
Thank you so much for your reply, reassuring to hear.
My gut feeling is it’s nothing too serious just wanted to see if others have similar experiences. I’ve had a really stressful few years and sometimes wish I could just switch my brain off and stop thinking it’s on overload.
Hi Andrea. I also have short term memory loss. I was actually blaming the Hydroxy and not the PV but hey who knows? I saw a photograph of my sister from about fifty years ago and named the little boy she was with immediately but try to remember a name my husband just told me and - gone! I am sure we will see others on here with the same thing. Lesley x
I also find that Brain fog is a problem, I take photographs for a local paper and when taking names for captions often can forget the names of people even those I know well, I tend to leave a blank and it inevitably pops into my head 10 min later, I mentioned it to my Haemo but it did not seem to concern her too much. I would not stress too much about it at this stage.
Absolutely agree with everybody who has replied. Brain fog is the perfect description. I get really embarrassed when talking to someone and I just stop mid sentence because I cannot think of the words I need to say. This has gotten to the point that if I have to phone someone I explain my condition and then ask them to talk to my husband. I think you will find a lot more people agreeing with your post.
How many more people on this site are being told that their symptoms are nothing to do with the condition? It doesn't take long to work out the fact that if they're not, then it's the medication. The latest (silly) comment from the US is that MPNs don't cause fatigue......! Then why is MPN voice cluttered with people like you and I who battle with it on a daily basis?
I've have decided that the next time my haema tells me a symptom is not related to the condition or drug, I will ask him if he has ever been diagnosed with an MPN and taken hydroxy or interferon. When he says he has not ..............!!***!
Same treatment - aspirin and venesection. I've had PV for 10 years and sometimes get brain fog and forget things I'm supposed to do. I put some of the symptoms down to my age and having had a stressful, full on job in the past where I had to be on the ball. Now I work part time in a less stressful job and think maybe because my brain isn't on high alert all the time and is resting. But it definitely gets worse nearer venesection time, so convinced it is also PV related.
I have the brain fog too. I always worry because we have a history of early onset Alzheimer’s in my family. My dad started having symptoms in his fifties.
I do recommend getting it checked out by a neurologist because heaven forbid it were dementia related, you may be able to slow progression the earlier it’s caught.
With my dad, in hindsight, he seemed like he had terrible ADD at first and wasn’t as tactful. He was forgetful but it was more than that. I’ve always heard it said that forgetting where you put the car keys isn’t cause for concern but forgetting what the keys are for is a huge red flag. I can see this with my dad. There was lots of confusion and he was able to hide it for a while until it affected his performance at work.
Hopefully it’s just brain fog like so many of us seem to deal with but if you are really concerned a neurology workup won’t hurt. Take care!
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