MF from ET

[Arthandiwe]

I have early stage MF from ET, and I‘ve had a headache for 12 days, with pressure over the left eye, and lightning flashes in the left eye. I just wondered if anyone else has had this? My doctor wants me to start taking aspirin twice a day now, & if that doesn’t work he will start me on hydroxyurea. He is reluctant to do that though, as I am only 51 years old, and would rather wait. Hopefully doubling the aspirin will help.

[EPguy]

In my totally non professional opinion your combined symptoms are the sort that suggest taking action quickly to rule out a stroke. Has your Dr discussed this in more detail? Likewise eye flashes alone can be a concern for the retina. That would suggest discussing with your Dr about a visit to ophthalmologist.

[Arthandiwe in reply to EPguy]

Thanks for your thoughts, I see my haematologist again in 2 weeks. If symptoms persist will talk to him about seeing the ophthalmologist and whether it could be blood clot related.

[hunter5582]

Visual phenomena in only one eye are more typically a retina-based issue. Brain-based visual phenomena tend to affect both eyes. Emphasis is on the "tend." Headaches and the visual issues can be MPN related microvascular issues. Doubling up the aspirin would be a logical choice if that is what the issue is. SOme people do find relief from this intervention.

I think EPguy has it right about not assuming anything about what this is. Prompt assessment by appropriate specialists is in order.

I think you doc is wise to hold off on HU for you at age 51. Do note, though, that you have other options including Pegasys and Jakafi. Suggest reviewing all of your options to treat the post-ET MF with a MPN Specialist.

All the best moving forward.

[Arthandiwe in reply to hunter5582]

Thank you! A lot to think about. Will definitely talk to my haematologist when I see him again in a couple weeks. Appreciate your input.

[BloodZero]

Yes I have had similar. Sort of. I was diagnosed with Et at age 34. Resisted Hydroxy for a long time even though platelets were averaging 1300. (Was taking aspirin)Around age 43 I was experiencing visual distubances along with an enlarged spleen. Was send to eye specialist and neurologist but they didn't find out why I was getting visual disturbances.

Started taking Hydroxy and symptoms went away.

[Arthandiwe in reply to BloodZero]

Thanks! My haematologist says visual disturbances and headaches are quite common with high platelets and will start me on hydroxyurea if doubling the aspirin doesn’t help. I’m glad to hear it helped you, that’s good to know.

[MCW22]

Those are the exact symptoms that I had when I was having a stroke at the age of 59. Pv wasn't diagnosed until I was 65. Lots of missed opportunities to diagnose both the stroke and the pv sooner. Stroke left me with loss of sensation in my fingertips of one hand. Carol.

[Arthandiwe in reply to MCW22]

Wow, I’m sorry you had a stroke, & went undiagnosed for so long, that’s a shame. I am confident that for me it’s just due to my high platelets. My haematologist/oncologist, who does specialise in MPN’s, did a physical and saw no signs of a stroke. My platelets, however had gone over a million, so he started me on Hydrea and the headache is mostly gone, which is great, such a relief! Hopefully the meds will continue to help.