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I see some of you talking about your allele burden though my hematologist has never mentioned that to me. How can I find that out?Is there a separate test for that? I did test positive for JAK 2 through blood work and had a bone marrow biopsy. Would my allele burden appear in one of those?
In my experience, the various mutations and corresponding VAF is from something called a Rapid Heme Panel. I had this test as part of the several investigative tests that were performed before I was… read more
I have PV
Dear Ruth,
I am lucky to have access to information and to be in a community of people with other types of chronic illness who share a lot on information and new research. As they share with me, I… read more
Thank you, Tatiana!
You are so knowledgeable. I asked my specialist at a recent appointment Whether my percent of mutated alleles that are JAK2 positive Have any correlation to the severity of my… read more
Dear Kathyryn,
Shingles being the reactivation of varicella-zoster virus (VZV), the same virus that causes chickenpox, it is usually linked to our immune system being a bit dysfunctional. MPNs can be… read more
I have been diagnosed with ET 4 months ago, my platelets are at 900.000, I have what I'm guessing is brain fog. Anyone every have it? Is it due to being under stress? This weekend, Easter, I forgot single things, a lot!!! I'm a little stressed. Is it just stress and my ET? Does this new symptom mean my platelets are increasing? Is this what brain fog is? Worrying a little bit if simple things I forget.
If that is an option, take it. You can get support for cognitive dysfunction and that makes life easier.
Thank you for the clarification. My Hematologist is not responding to my e-mails. I have to call her office tomorrow to follow up. I don’t understand why they can’t just respond. Usually they respond… read more
Today I had the lowest platelet count I have had in the 1.5 years of blood tests since this diagnosis (634k today, and have been up to 923k), but was convinced b/c of the head tightness etc it would be worse. Nothing different at all in terms of diet, workload, etc. Maybe I am transitioning…confusing! I guess naturally we have a range of fluctuating up and down constantly, but this range seems large. As background, I am on daily aspirin but no other meds at the moment.
As it turns out, the platelet count on my last test was 821K from the lab, so you can’t really trust the on-site machines/spinners that spit out the results right away! Now I am re-thinking my… read more
https://www.pvreporter.com/mpns-and-alzheimers-...
Another very insightful post from you, Tatiana. You provide a lot of food for thought, and we certainly need plenty of that to try to stay on top of our many dilemmas.
I have ET (CALR).
Dear Janet,
My dad, who was diagnosed with high-risk myelofibrosis after he passed away, had bone pains from ET since late adolescence. They were explained away as rheumatoid arthritis, he was… read more
My Dr is starting me on hydroxy regardless I guess because of symptoms, fatigue and headaches. Anyone else in those platelet levels and on hydroxyurea. I'm a little apprehensive about starting it especially seeing that my levels are dropping. Is it too soon?
One more thing, I credit 6 day a week cardio, 20 min on bike and 20 min on treadmill for drops in levels, also lots of water and good nutrition.
Never make changes towards your meds unless advised by your Dr. As these are just not a normal medicine.
