Should I be asking for a BMB?

[jillydabrat]

Hi my MPN friends

I have posted before about my chronic joint pain, especially my back trouble.

I was diagnosed with PV Jak2+ in 2014 but I think because of the miscarriages and DVT's I can say my symptoms go back to the 80's. Because of this I am wondering if I should be asking for a BMB to see what damage has been done over such a long period.

It is the back pain that is pointing me towards this as I know damage to the bone marrow can cause chronic back pain.

I was never offered a BMB which did confuse me so I am wondering if now is the time.

Any advice please.

Thanks guys

Jill

[pontygirl]

Hi Jill

I'm sorry to hear of your history always hard on folk..

BMB I had two last year and hence my Diagnosis..

I can only talk of my experience obviously, late last year I developed Bone Pain especially in my back and yes it is often associated with the Bonemarrow being scarred..

I understand why you feel the need to establish the cause of pain, you have my sympathy..

Maybe an option to ask your Haematologist, it is the only way to establish how your Bonemarrow is.

If you do go down that route I wish you the Very Best Outcome...

Do let us know how you get on..

That is my Biggest Problem, if I stand for more than a few hours cooking, doing anything I'm done for..

I do things in stages real pain in the butt..

I'm wondering if you have this awful weather, really puts a Dampner on things doesn't it..

All the Very Best to You..

Mary xx

[hunter5582]

I also have chronic back pain and other joint pain (mostly hands,feet, also shoulder, knees) along with the JAK2+PV. The back pain is diagnosed as spinal deteoration (age related) in L4-5 and thoracic spine. The joint pain is diagnosed as osteoarthritis. I believe that there is a link to the JAK2 in that JAK2 signaling increases the production of inflammatory cytokines. These cytokines are thought to be responsible for many of the secondary symptoms we experience. This is fairly new research and does not seem to be in common practice yet. I am trying to get a doc to run a cytokine panel, but have been told it is mostly a research tool and my docs don't know how to fo about ordering and using the cytokine panel.

The inflammation related conditions I experience include osteoarthritis, eczyma, insomnia, and GERD. Possible link to tachydardia as well. Therefore, I really do want to try to get more information on this and see what I can find out.

It is really hard to figure out what is MPN related and what is not. We can certainly have unrelated coocurring medical issues. Sometimes the docs don't know either. Hope you get some answers soon. Back pain is really difficult and not something we need to manage on top of the MPN. FYI- I siccessgully manage my back pain with massage therapy (from a very skilled therapist), The Qigong is also helping.

[socrates_8]

Hey Jilly...

Sorry to hear that you are suffering in any way, and hope you can sort some answers soon...

Good advice from Pontygirl, "...speak w/ your Haematologist and ask for a BMB..." as that might be the only way to allay any apprehensions you might have.

For many of us BMBs are quite straight forward and routine, but a few report of unpleasant experiences too... Both of mine to date were quite simple affairs... Hope yours will prove to be as well...

Stay in touch...

Best wishes

Steve

[Yvette49]

Hi all, reading your post with great interest. I have PV jak2+ am off Hydroxycarbomide because of mouth sores (cleared up now ) but seeing oncologist next week about interferon injections.

I am suffering at the moment ( last 2 months) with sciatica and back pain, doing all my exercises, acupuncture and chiropractor, it’s not helping much.i thought I must have a disc problem, but reading your post, could this be linked with PV ?

I had two ops on a disc three years ago for left leg, now it’s possible I have it in my right leg. I have a back support belt coming today, hope it helps as I am finding it difficult to walk at the moment, it’s really miserable ☹️

Xxx

[Hidden]

YES!!!!! DO IT! If I have learned anything with my health situation is that we HAVE to be our own advocates!!!!! Others are willing to wait and see.... but things change quickly and you need to be on top of it. My doctor told me " Why; its just information they don't know what to do with?" Boy was he off base. If you think you need it then request it. Even if its only a base to work from its something.

[Tico]

Hi,most haemotologists are reluctant to perform a BMB unless they suspect your condition might be deterioting or might be transforming into mf,etc, especially if you have been diagnosed as Jak2 through bloods,but you can still request it and explain your reasons why. Atb,tina🤗

[Indigo42916]

Hello,

I have had two BMBs, one to diagnose and the other a second opinion. They are important, as they give the full picture of what is going on. I will have another next year to see if the Pegasys has changed the marrow. The test can identify early signs of disease progression. As we are all learning, it is important to address things as early as possible. With an experienced provider the procedure is not a big deal.

Take good care.