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Hi Edna,
Tinnitus in ET and PV is considered to be due to too many blood cells (platelets in ET and red blood cells in PV) in the blood vessels
"ET may also cause hearing problems, such as tinnitus… read more
As far as one can read, it cannot. MPNs (ET, PV, MF, unspecified) do not behave like solid tumour cancers that can metastasise to other organs
MPNs might be secondary to other cancers, mostly as the… read more
Many of us myself included have said we noticed changes in our bodies and self and symptoms long before we were actually diagnosed.
This bothers me bc I want and need to know, as do we all.
It’s wrong to go by the date we were diagnosed.
Anyone? Thoughts?🤔
Depending on the type of mutation you have, you can sometimes distinguish between inherited and spontaneous, as well as using VAF % between different testings (it is good to repeat the genetic testing… read more
He was proactive at least
ran extra blood tests, did a blood test to check blood thickness, a chest CT scan to look for clots, a pelvic ultrasoundand to check spleen if enlarged, and a transvaginal ultrasound bc longer heavier shifting periods last 3-5 years.
Chest CT Scan negative, pelvic ultrasound no clots either. I didn’t think there were but felt better doing it bc I have medical anxiety, and anxiety about Rx, meds, even some holistic herbs, etc.
I think period issue, being 44 and also… read more
I go to MDA and they accept my insurance. I just got on Medicare, but they seem to indicate they will pay. You do need to see MPb specialist. The local oncologist/hematologist doesn’t usually have the… read more
My father had Mylodysplastic Syndrome (MDS). Is this considered a MPN?He died from leukemia in the end. He was diagnosed 10 months prior.
I and several other people on here have MDS and MPN and JAK2 mutation as well as other mutations. Leukemia is what we’ve been trying to avoid with treatment. Some have less or more of a propensity to… read more
I have PV JAK 2 positive. My numbers have not gotten too high. I get pins and needles itching and and I’m tired. At work I have issues with instant recall of new laws and procedures.
Thank you Tta, this list of symptoms really helps.
I have been taking a Super B complex for probably 10 years, also a women's multi vitamin the past couple of years, with my doctors knowledge and no restrictions.
My platelets have been stable for… read more
Fatigue is a staple of MPNs and it is explained away and dismissed, although it can be disabling
https://onlinelibrary.wiley.com/doi/epdf/10.100...
"Prominent symptoms include fatigue (92.7%), early… read more
I have PV and have platelets in the 1000 range. My oncologist says no worries until it reaches a million. But I'm having a major surgery soon. Anyone know why high platelets are not important? Thanks
Tbat is very high and anesthesiologist might not clear you for surgery..
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