MPN and back injuries

[MaggieSylvie]

A week after my diagnosis with MDS/MPN I got a slipped disc. Less than a year after that, I was still suffering but it had just started to improve and then it happened again when I was emptying the ash into the kitchen bin. Six weeks later, (a week ago) I was bending down to wash my face and it happened again. I feel as if my back is broken and so vulnerable. Does anyone know if blood cancer has anything to do with these recurrencies?

[hunter5582]

I expect the answer is "yes" to this. Also saw your post regarding osteoarthritis. The common theme here is inflammation. At the core, MPNs are inflammatory disorders. The dysregulation of the JAK-STAT pathway caused by the MPN driver mutations causes the body to over-produce inflammatory cytokines. This is thought to cause a host of the secondary symptoms people with MPNs experience. Like you, I have osteoarthritis all over my body. Also experience GERD, plantar fascitis, insominia, eczema and a few other likely inflammation related issues. Also have spinal deterioration - lumbar, thoracic, neck. I actually have more trouble with these secondary issues than the primary MPN symptoms.

There is a good bit of research out there on this topic. Here are a couple to get you started.

sciencedirect.com/science/a...

ncbi.nlm.nih.gov/pmc/articl...

All the best to you,

[MaggieSylvie in reply to hunter5582]

Thank you hunter5582 for your helpful reply. I have not yet been told what, if any, mutation I have and the MPN doesn't seem to affect me much - in other words, I am no aware of it apart from the loud pulse.

I always suffered from a bad lower back, and then a few years ago when after seeing many therapists and getting a memory foam mattress, it disappeared and I started to get pain further up my spine instead. When I got my MDS/MPN diagnosis I was told I had scoliosis, so this might be the cause of that. Now, while not overly painful, my neck has started creaking a lot, so I suspect that OA may be in several other places than just one knee but I don't get to see a specialist at all because I took my knee to A & E (I was at the hospital, being a driver for my partner so I used the time while I was waiting). This means that while the MDS/MPN is stable, the OA is probably marching through my body. I used to suffer a lot with fibromyalgia and probably still do but my body doesn't know the difference. I used to have insomnia but since lockdown I am now sleeping like I used to and life is more regular as a result. Not sure why this is when other people are experiencing the opposite. I think the OA required me to rest a lot which has caused some muscle weakness everywhere. Now I can hardly move but my knee is giving me very little problem. My dermatologist hasn't said anything about my back pain but since my hemoglobin isn't producing enough oxygen for my blood, the oxygen is not getting to places, apart from my lungs, where I need it.

I'm hoping my problems are not the result of changing my mattress to a memory foam and little springs, which I did just before the first "slip"; I sleep well on it but I hate the way it collapses when I sit on the edge and try to get off the bed. Thank you for the links - you are very knowledgeable .... I will click on them. Thanks again.

[hunter5582 in reply to MaggieSylvie]

Do be sure to find out which of the driver mutations you have. It does matter in terms of your overall treatment. the bottom line is that all of the driver mutation dysregulate the JAK-STAT pathway. Systemic inflammation is a real thing and can cause a host of problems. Most docs have so little knowledge regarding MPNs that they are unaware to the way it all links together. Inflammation is not our friend. This is why I consult with a Integrative (Functional) Medicine doc, who specializes in the more systemic view of the body.

FYI - I found a Curcumin blend that works better than any NSAID I ever used. I have not taken nor needed an NSAID for the osteoarthritis for about 4 years now, The Integrative Med doc added two other supplements (SPM Active, L-Glutathione) to the mix to try to control inflammation. This approach really does help.

All the best

[MaggieSylvie in reply to hunter5582]

Dear Hunter, one of the things I haven't found out yet is whether you can have this condition without a mutation! The only treatment I have is daily aspirin. And I don't know how much of an expert my dermatologist is. She seems expert enough and as my symptoms are negligible, I hardly dare ask! She has been very helpful in getting scans and x-rays done. My next (phone) consultancy is 10 September.

How can I find a doctor like the one you describe who is more holistic? I have tried Holland and Barrett curcumin but haven't been to the shops since lockdown so I have none at present. I take Naproxen but not every day, and no longer need it (for now) for the knee. I don't actually believe the pain I had in my knee for a while in the first year was due to OA but to something else unspecified. I suppose your Integrative Med Doc is private.

[hunter5582 in reply to MaggieSylvie]

Yes to having a MPN in the absence of one of the three driver mutations. It is referred to as "triple negative." It is a rare part of a rare disorder that is not well understood.

I may be having a brain fugue, but I think one of my messages must have gone astray. Hopefully this will not be a repeat. You made reference to your dermatologist, but I am wondering if this was meant to be hematologist. Regardless, many docs - even hematologists do not have the expertise to optimally treat MPNs. These are rare disorders and even hematologists will typically only see a handful of cases in their entire career. It is very important to involve a MPN-expert doc in your care team. You absolutely dare ask as this is a vital part of your care needs. Any competent ethical physician will welcome input from a colleague with greater expertise. My approach is to use a fabulous local hematologist for my ongoing care needs, but he in not a MPN-expert. I also have a consulting MPN-Specialist who I meet with periodically who advises us on my care needs. This arrangement works great.

Finding an Integrative (Functional) Medicine doc depends on where you live and what your healthcare system is. Here where I live in West Virginia with really good health insurance, I still had to go outside of my healthcare system and private pay for this service. It is not cheap, but it is worth it.

Regarding the Curcumin - the blend you use does matter. Curcumin is not readily bioavailable. It needs help to make it into your body. I use a proprietary formulation called CurcuWin - which is in the Spring Valley brand Turmeric-Curcumin Blend that I buy at my local WalMart (of all places). It is the formulation my Integrative med doc recommends. There are other bioavailable blends that work as well. Do be aware that like most anti-inflammatory agents, curcumin does have some blood thinning potential.

I do hope you get answers to all of your questions. All the best to you.

[MCW22 in reply to hunter5582]

A year after my PV Jak2 diagnosis I had a spinal fracture, one year later I had another and like Hunter said the spinal and hiatus hernia cause far more pain and discomfort than the blood cancer,which is under control with ruxolitinib.

Carol

[MaggieSylvie in reply to MCW22]

Yes - absolutely. But why am I hurting my back so often? Does blood cancer give one a predisposition to it?

[MCW22 in reply to MaggieSylvie]

Yes Maggie. I Googled and found a connection between blood cancer and spinal degeneration. When I put the idea to one of my consultants she said any bone marrow condition will weaken the bones. One of my MRI reports even says caused by my mpn

Carol

[MaggieSylvie in reply to MCW22]

Hi Carol, After being free from lower back pain for some years, I "slipped a disc" in June last year helping my partner lift paving stones. Yep. I know, I shouldn't have agreed to do it, but I was successful over each threshold in the house until the final one. I went to hospital at my insistance and got an x-ray from which they said I had no spinal degeneration. In a slipped disc, it's not the bones that go anyway, it's the ligaments and muscles if not the spongy discs between the vertebrae.

Since then I have not recovered but have had a repeat of the injury twice. Now, I can hear creaking in my lumbar region. I'm not having any preconceived ideas about what causes that but it's new. The advice is to live normally and rest as well. I was given exercises a year ago and will continue to do those but this injury is more severe despite only being caused by bending down to wash my face! Keep taking the tablets!

[MaggieSylvie in reply to hunter5582]

Hi Hunter, Think it's me that had the fugue; didn't mean to say dermatologist! though I do have to see one now and again with rodent ulcers. I'm in the UK so it's likely that finding the equivalent of the remedies you are getting will be quite hard for me. I was diagnosed just over a year ago, so have been seeing my dermatologist every three months or so. I should do some research on her but I am low risk, so I don't suppose her expertise matters much at this stage. I get the impression I am just a "chore" to be got through each time I visit. In September it will by via phone. Thanks for the information. I will see if I can find a source of Spring Valley Curcumin and discuss it with my harm. I'll go on line to see what I can find out about local IFMD. Thank you for all your help.

[hunter5582 in reply to MaggieSylvie]

Docs who make you feel like a "chore" are docs who need to be replaced. Compassion is just as important as knowledge. The best physicians are those who combine the science of medicine with the art of healing. When you have the kind of complex multifaceted issues you are facing, you most certainly need physicians who are skilled in both aspects of patient care. I suspect that you may encounter some docs who simply lack the expertise to provide the care you need and do not want to have to acknowledge the limits of their own competence. Those are also docs who need to be replaced.

Not sure whether the specific Spring Valley brand is available in the UK. The active part of the blend is called CurcuWin. This is a proprietary curcumin formulation that can be found in a number of different brand names that use this in their product. This is only one of the blends that is bioavailable. The bioavailable part is what you are looking for. Other blends include piperine (black pepper extract) to help with bioavailablity. This works too.

Regarding Integrative Medicine docs, I do know there are some in the UK as other forks on the forum have mentioned them. These docs are also referred to as Functional Medicine docs. Here are a couple of UK links - have no idea about the quality of these particular docs. Perhaps others on the forum can weigh in.

ncim.org.uk/

functional-medicine.associa...

It sounds like you may have never actually seen a MPN Specialist. This is a very important thing to do given the complexity of your health situation. It is worth doing whatever is necessary to make this happen. Here is a link to MPN-expert docs

mpnforum.com/list-hem./

Hope you get answers to all of your questions. All the best to you.

[MaggieSylvie in reply to hunter5582]

What would I do without you, Hunter? Thanks for taking the trouble to reply. At present I've been sitting down too long trying to sort out a replacement for my air to air pump system (heat and aircon). I know I need to move around. Take care.

[hunter5582 in reply to MaggieSylvie]

Do get that fixed! Here in West Virginia we have been having days in the high 90s with humidity to match. YUCK! I'd be a goner without AC.

[MaggieSylvie in reply to hunter5582]

In the UK it's not that bad. I've got cool air but no heat for when the winter comes. The company it comes from still makes them but I can't find anyone near or far to install a replacement. Think I'm going to have to go back to my plumber who re-gassed it and order a different make that he can look after. It would be cheaper as well, but it probably won't fit on the wall the same way and I'll have a redundant £200 worth of remote control! Maybe sell that on Ebay but most people don't seem to have what is supposed to be the Rolls Royce of Air Con. We don't have anything else as good for heating in the winter apart from a wood burner which we only run in the evenings. We have solar panels. I've clicked on your links and there is no clinic nearby. I am now going to look up my haematologist. Thanks again.

[Wyebird in reply to hunter5582]

Thank you I enjoy your posts. You are a mind of information and most informative. Do you have a medical or scientific background.

[MaggieSylvie in reply to Wyebird]

Hi Wyebird, Thanks. I am not really a mine of information other than having some kind of degree from the University of Life! I have had a lot of people in my life with health problems as well as having some myself. I have a good memory too so a lot sticks. Combine that with an enquiring mind and a laptop and you get someone who appears to be a mine of information. So medical or scientific background other than experience and a lot of years behind me.

[Wyebird in reply to MaggieSylvie]

It’s lack of memory that’s my major downfall. Keep researching lol - and thank you

[hunter5582 in reply to Wyebird]

My educational background is a Master's degree in clinical psychology. I had a strong interest in neuro-psychology, but did not spend my career with this focus. I have actually only had limited medical training, but was taught how to do research when getting my degree. This has been really helpful as I have embarked on getting better educated about MPNs and the other issues that have impact. I also learn a lot from this forum. One of the things I love is the sharing of experience and information.

All the best to you.

[Tartanlady]

Good morning MaggieSylvie, finally i have someone diagnosed with MDS/MPN....the same as me!

I had an operation on my lower back L5/L6 over 10 years ago but only diagnosed with the MDS/MPN Crossover syndrome in March last year. I do still have problems with my back but don't know if it's anything to do with my recent illness.

Sorry, not much help but had to make contact because of the crossover.

I'm currently on EPO injections weekly and daily asprin and doing fine x

[MaggieSylvie in reply to Tartanlady]

I'm glad you did, Tartanlady. It's hard to find others the same. We're probably not even identical! Keep in touch. I may let you know how mine breaks down.

[Tartanlady in reply to MaggieSylvie]

My haemoglobin is affected by the MDS and is low and my platelets are high with the MPN. Seems we are very few and far between with the crossover and no definite treatments or prognosis. How are you affected? I notice you are UK, I am also UK Scotland.

[MaggieSylvie in reply to Tartanlady]

Yes - it sounds similar. I have refractory anaemia with ring siderobes and myeloproliferative disorder - thrombocytosis. So the red blood cells are not all maturing correctly and therefore not supplying optimum oxygen to the body and the white blood cells are overproducing a bit so I take aspirin to prevent sticky blood. It's not so much beyond normal, so I am on Watch and Wait at the West Suffolk Hospital. I am still learning. I was only diagnosed at the start of June last year via BMB. To have that and then a slipped disc within a week was just too much.