MPN Symptom Uncovered

[PVReporter]

PV Brain Fog (likely the same for some MF & ET patients). I think this is a fairly common symptom or else I am just a little slow mentally...lol. - pvreporter.com/polycythemia...

Cheers,

David Wallace - PV Reporter & MPN-CC

[clubdino]

I thought you were gonna tell us that the Old Bay got rid of your brain fog. 😄 Even if it did I still wouldn't eat it because I hate that stuff and I live in Maryland where it originated.

The brain fog is rough. Twice today I was in the middle of reading a news article and in the middle of it I forgot what I was reading about. I do that with books all the time..you know read the sentence over and over without it sinking in. A couple weeks ago I ordered a houseplant through the mail that I was super excited to get. Two days later I go to spray it with water but I accidentally picked up a bottle of cleaner and sprayed chemicals all over my new plant. 😞

[Kelly2 in reply to clubdino]

😲 what happened to the plant?

[clubdino in reply to Kelly2]

It has little black spots all over it now. 😞

[Kelly2 in reply to clubdino]

It will be ok with care and a fertilizer.

[PVReporter in reply to clubdino]

I love the Old Bay comment, if that got rid of brain fog it would be flying of the shelves. You sound like me. As far as books, I can hardly make it through a book, unless it is super interesting and short.

[Chez1947]

New here I have PV Jak2+ what is MF and ET please,

[Hidden in reply to Chez1947]

Hi Chez1947,

Myelofibrosis (marrow scarring).

Essential Thrombocythemia (ET) is a chronic myeloproliferative neoplasm (MPN) characterized by an increased number of platelets in the blood.

[Cja1956]

I know exactly how you feel. Brain fog is a big problem but can be caused by many different things. I got diagnosed with fibromyalgia in my 30’s and they called it fibro-fog. I got diagnosed with ET when I was 52 (11 years ago) and then PV about 3 years ago. If I don’t write everything down, I forget it. It’s really frustrating but I just see it as part of life. Luckily my friends, family, and even my clients understand and are patient with me.

[Kelly2]

Hi, at the beginning of 2018 I had a painter who worked for two weeks in the house. One morning I woke up as usual to get ready for him, saw things on a table keys etc and couldn't figure out what I was doing with them. The feeling was terrible, I was squeezing my brain to remember but nothing! This lasted some time and when he came and told him what had just happened to me he insisted that I go to the hospital. I didn't and called a relative of mine who is a doctor telling him that possibly I had a stroke. Very casually he asked me what I had eaten yesterday and when I told him he said no you didn't have a stroke. Could it be brain fog? I didn't have it again fortunately.

[clubdino in reply to Kelly2]

Do you mean that you forgot what keys are for? Or did you mean you just couldn't remember why you set them there in the first place? If you forgot the purpose of keys that is concerning.

[Kelly2 in reply to clubdino]

It wasn't just keys. Other things also on the table that I don't remember after all this time. I couldn't remember what I was doing with the stuff. Terrible feeling having a blank memory but I sat down and after a while everything came back. I never mentioned that to my doctors. Probably should have.

[clubdino in reply to Kelly2]

Hmm...maybe a TIA? Or it may be something similar that happens to me all the time...like sometimes I will walk into a room to retrieve something and by the time I get to the room I have already forgotten what I needed.

[Kelly2 in reply to clubdino]

No the same happens to me often when I have a lot to do. That one was totally different and I got scared. I will mention it to my haem. next time I see him.

[Pollygator in reply to Kelly2]

Hi. I have had two experiences of major memory loss in the last two years. Lasted about an hour, I could not remember heaps of things like the name of the country I was in, my daughter in laws name etc. But I was able to carry on a conversation and I understood everything that was happening around me. It passed and I felt fine. I had a MRI and went to a neurologist - all clear, yay! No real diagnosis but may have been a silent migraine. Migraines can be a thing with ET. If there are no long term affects, scary as it may be I can live with it.

[Kelly2 in reply to Pollygator]

I hope mine was something similar!

[Cja1956 in reply to Kelly2]

Something similar happened to me years ago but soon after my diagnosis of ET. I had just come home from work and I couldn’t remember a thing about my day. My boyfriend got so worried he took me to the emergency room. They thought it was anxiety and prescribed Xanax. Looking back, I wonder if it was the illness or the hydroxyurea I was taking. Now, 11 years later, we’re both used to my lack of memory and brain fog.

[Jacki_Clayton]

Thank you! I laugh it off, but you described it perfectly. And thank goodness! I worried it was/is early ALZ symptoms too.

[Sheryljean]

Thank you for this. I have told my husband that there are times during the day where I feel that, just for a minute, am not really focused. That “drug” fog. I’m on Jakafi, but the fog is not as bad as the Hydrea fog was.

Glad I am not the only one.

Also, found out I have a kidney stone..side effect. One side effect of Jakafi is UTIs and from there, the kidney stone. My dr said that it seems they are now treating the side effects of the medicine we are given. Confirmed the stone on Monday and getting it blasted Thursday. Gee, what fun...not

Good wishes to all out there!!🌝🌝

Sheryl

[Devilgirl]

I gave ET but not on medication yet. I have been getting 'brain fog' & forgetful for years. Tried writing myself notes but then forget where I have put them. I have just been putting it down to an age thing (in my late 50s).