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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.
Itās wrong to go by the date we were diagnosed.
Anyone? Thoughts?š¤
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 testingā¦ read more
Is 60 the magic age to start meds for PV?
I don't think immunosuppressed folks with transplants (like me) can take interferon meds, at least, not besremi.
We all need fun in our lives. =)
Hello everyone!
Hope you are all doing great and feeling so well.
I am 51 and i have been diagnosed with ET last month. I also had my spleen checked with ultrasound imaging. I want to know if it will be regularly checked, i mean how often: quarterly, semiannually or annually?
Also after my medication dose is fixed (i am on Anagrelide), how often shall i do the blood picture? Last question: what are the tests other than the blood picture that are done in regular follow ups?
TIA
Janet dear you have been through a lot. Hope the new medicine works great for you. Wish you all the best. Lots of hugs and kisses from me
Is there any info about IF and 2/3 days fasting (only tea). NL doesnāt have any info about this. I have to start with med, but want to maybe postpone this.. try to create the best bloodwork possible..Is this possible via fasting! I know about the Mediterranean dieet. Pleas can you make me happy with an advise? Thanks
I use beetroot in my juices plus I really enjoy beetroot
Here is what is written in an article I am reading about beetroot-
āBeets are high in antioxidants. Like carrots, theyāre also rich
inā¦ read more
I remembered there is an article on this website, so this is the link for this
https://www.mympnteam.com/resources/pain-and-mp...
I found a clear and simple explanation of why we experience boneā¦ read more
I have PV JAK 2 positive. My numbers have not gotten too high. I get pins and needles itching and and Iām tired. At work I have issues with instant recall of new laws and procedures.
Thank you Tta, this list of symptoms really helps.
I am hoping someone can help. I am 37 years old, and had a bone biopsy a few months ago to see if a vertebral lesion was malignant. It came back negative for a metastasis, but showed myelofibrosis. I was referred to a hem/onc who does not think it's an MPN because of my age. I just did 23 and me DNA testing, and it came back positive for the JAK2 mutation. The hem/onc now wants to do a bone marrow biopsy, but I don't think it's necessary as I have all of the diagnostic criteria for Primaryā¦ read more
I was told by an MPN specialist that they can see everything they need to from a tube of blood. A biopsy confirms what they suspect from labs. Confirming gives them a better idea of what they'reā¦ read more
Janet good question. I know that you canāt donate if you have an MPN. Linda
I have well-managed ET with minor symptoms. I have seen others talk about ābone painā and Iām not sure exactly what that means. Is it the same as joint pain (knee/wrist/etc.)? Or is it something else - such as sharp pains in long bones like the arm (radius) or thigh (femur)? Can someone please describe it in more detail for me & explain how it was diagnosed, and what your doctor suggested for relief ? ~ Thanks!
Thank you, Tta, for such great references and information. Itās very helpful! Lydia ~ thank you for your insight as well. I had a strange pain in my upper left arm/shoulder last year that wouldā¦ read more
