BMB (Bone Marrow Biopsy)

[Woodlandgarden]

I had a series of blood tests over the course of 12 months between gp and then my referral into my local hospital haemotology department . As all tests turned up negative for mutations, while my platelets continued to stay up/increase Haemotologist explained BMB (Bone Marrow Biopsy) was necessary to rule out any other causes. He was very surprised with my results as in his words BMB confirmed definitively and beyond any doubt that I have ET even though I have no mutations. I feel if he had been able to identify mutations in my bloods I would have received diagnosis much earlier and would not have been referred for BMB. As an aside, diagnosis although upsetting was also a relief for me as it explained the multitude of symptoms I was experiancing. Feeling better now, on daily asprin as aged 58, exercising daily, drinking lots of water. As a result, my symptoms have become much more manageable. Also, this site is a wonderful community 😊 to keep linked in with. Take care and keep safe.

[Mazcd Partner MPNVoice]

Hello Woodlandgarden and welcome to our forum. Glad to hear that you are feeling better now and that your symptoms are more manageable. It is upsetting when you are told that you have ET, but at least now you know and can learn more about it, and you are doing the right things with exercise and drinking lots of water. There is a lot of very useful information on our website mpnvoice.org.uk so have a look. Best wishes, Maz

[Chaz1]

Welcome to the group. Glad you are having some relief from your symptoms. Although a BMB is not a pleasant experience many who have a mutation still have a BMB to have a benchmark for the future. There is every possibility that you'd have still had one even if a mutation has been found.

After my husband was diagnosed we asked for one to be performed. It then was asked if he'd allow some of his sample to be used for research. He now has regular blood samples sent off for the research as well. Not sure what they are particularly looking at etc... but its nice to think that from something unpleasant it's helping others.

[samiris in reply to Chaz1]

While it's good to give samples for helping others through research but not always these kinds of "Research" are for helping others. The purpose and scope of research and sampling must be clear as there is possibility of abuse.

[Chaz1 in reply to samiris]

This is Cambridge & Oxford research universities so no harm of abuse. If I hunt out we got paperwork given to us but at the time we were still in shock of his secondary diagnosis so I can't recall the exact research it is. For rare disease something or other but is definitely above board.

[hunter5582]

Glad to hear you have an answer. There are indeed people with ET who are triple negative for mutations. Hopefully over time we will learn more about this. meanwhile, welcome to the club that none of us wanted to join, bit are all glad to be a part of. Glad to hear you are feeling better. I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. I am fortunate to have a relatively indolent MPN and have been able to manage the symptoms successfully, despite some challenges. I hope you are looking forward to a long and happy life successfully managing the ET.

All the best

[Woodlandgarden]

Thanks everybody

[JaK2ET]

Welcome to the forum. Our illnesses are rare but you may be among the rarest of the rare, as a "triple negative" person. Good luck!