Love that there is so much help in here to get through tough stuff. Also really keen to hear the good news. From people who have had an MPN and going well, with whatever treatment they are on.
Feel free to share!
My good news is that I'm visiting Australia (where I come from) and getting through early diagnosis. Watch and wait, venesection, natural aspirin (white willow bark, meadowsweet, fish oils, anti-inflammatory diet). Age 50. PV Jak2. Also Haemochromatosis diagnosed 19 years ago, which is how they picked this up.
My husband is more and more supportive all the time, as he learns what I need to hear and don't. Team at Guys is great (Prof Claire and all). First BMB was a bit scary - waiting a month for result - but has been confirmed as Grade 1 and still PV. Ongoing gut trouble and some migraines but getting on top of it and enjoying life.
Anyone else out there?
Written by
ilovetoastwithbutter
To view profiles and participate in discussions please or .
Hi yes, i'm still getting on with life and enjoying it, regardless of these little trials that come our way, i'm thankful for a loving daughter,son in law and 2 beautiful grandchildren, i'm also thankful for friends what keep me laughing and for god for giving me a good sense of humour but most of all i'm thankful for life and being here today to say that! Can i please now have my oscar for my speach?....Ha Ha only joking,told you about that sense of humour🤣. Atb, tina🤗
Hello ilovetoastandbutter I have only recently been diagnosed PV JAK2 Exon 12 but peculiarly this diagnosis came right out of the blue following a blood test done for psoriasis and psoriatic athritis. Absolutely no identifiable symptoms which led me to this forum where I see most people have symptoms of some kind however mild. I am now being tested for Haemochromatosis (celtic disease) and, in the past, I wouldn't have even considered this as, again, I had no symptoms. This condition has an impact on my children though so chekcing it was a no brainer. I walk between 5 miles and 15 miles a day which always clears my head and I'm trying to keep my weight under control, not always successfully. I'm not sure if I should expect symptoms further down the line but this feels like a positive post inspiring me to respond to your post but could you tell me what BMB is and should I expect it?
Hi cythemia, bmb,stands for bone marrow biopsy. Sometimes it is not necessary to do one,diagnosis of mpn is based on a critera defined by WHO, world health organization.
Hi ilove toastwith butter, have you got a shorter username, the one your using is giving me RSI in my finger! Lol. I'm glad your husband is supportive and you got through the bmb. The waiting i know is hard for the result. I hope your gut problems and migraines resolve themselves, it's good your on watch and wait,long may that continue. Atb,tina.🤗
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Test Results - good news for now
An Update (good news)
