Following an MRI scan, my physiotherapist consultant was kind enough to share an image he had got together, showing that I have three bones in my spine that have undergone recent changes. Normal vertebrae are square; these are rectangular and have oedema. He said that these changes are caused by my blood condition (MDS/MPN), which is why he has passed me on to the haematology team (copied to my GP)
Apparently, it is unlikely that they will offer surgery. My partner has been advised by his GP to see a chiropractor and I'm wondering whether this would help me. I never thought to ask my physio.
I wonder what the mechanism is for the blood to change the shape of the vertebrae.
and why the pain, as there's nothing wrong with the discs.
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MaggieSylvie
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I have not heard of MDS/MPN directly causing this issue. Perhaps something to do with bone marrow abnormalities?? I would be more inclined to wonder about the impact of chronic inflammation related to deregulation of the JAK-STAT pathway. The overproduction of inflammatory cytokines can cause multiple problems.
Chiropractic care might be worth a try for pain management. Some are much better than others. I also experience chronic back pain, in part because of the systemic inflammation. I see a skilled massage therapist who really helps with the back pain. The anti-inflammatory regimen I follow also helps in a broader way. Curcumin in particular has been a big help with joint pain.
Thanks again Hunter, just googled When not to see a chiropractor, and was advised that you shouldn't if you have cancer. Not sure blood cancer counts. I don't have a mutation.
I really don't know either. I would not think it would be an issue. More of an issue - quality of chiropractic care is quite valuable. Have friends that got hurt by a chiropractor. No different than any medical care I guess. Skill of the provider matters.
Well the chiropractor was recommended by our GP, and very good reputation. Hopefully they'll help my partner and my appointment is a week later so I'll have time to perhaps speak to the haem team. Never seen a chiropractor. Have seen osteopaths for years but, like massage, it's never a permanent relief.
I'm just wondering why you don't pursue treatment with the physiotherapist who already knows your history and has seen your MRI scan plus is in contact with your GP and haematologist? Did the physio suggest possible treatment/exercises? Physios are possibly the best professionals to start with before osteopaths and chiropractors, especially with the added blood complication.
I have had an assessment by the assessing physiotherapist and passed onto a physiotherapist who has sent me exercises. I only got this new information today and was told basically not to overdo things. I won't be overdoing things and will continue with the exercises. Physiotherapists do not do "hands on" treatment any more and nowadays everything is by phone. I don't know what my new condition is called. Perhaps it is another stage towards leukaemia for which I have so far been labelled low risk. I am only on aspirin and pain killers.
Sounds rotten for you and constant pain is so exhausting. I understand a lot of private physios are doing virtual calls so they can demonstrate exercises but I appreciate that might be expensive. Personally and I really can only say from my own experience with Post ET MF and having had a blood clot I would be very wary of anyone doing massage or manipulation without medical concurrence and specialist training. I hope you can find some relief.
Thank you DJK12. The exercises aren't any different from those I was given before, in person. Instead of being for an arthritic knee, they are now for "bad back". I'll just have to wait and see. I won't be having any manipulation if it's not right for my condition.
My relationship with these two physiotherapists is very new. I have seen the consultant for assessment, and spoken with the physio once. I got the diagnosis yesterday by video call. The chiropractor only came into the equation because after months of coccyx pain, I finally persuaded my partner to make an appointment with the GP - yesterday - and this is how it all transpired.
Sometimes there is swelling in our bone marrow which causes inflammation of the covering of the bone also known as the periostium. I doubt a chiropractor could help that but I could be wrong.
Or maybe you have extramedullary hematopoiesis of the spinal cord. Also called EMH, it happens when blood cells form in other parts of your body instead of the bone marrow. It can happen in many areas...the spleen, the skin, etc... Check it out. I find this article very interesting.
I don't think this is me. Three of my vertebrae have changed volume and shape so that they are narrower than normal (it's clear to see on the scan) and they each have a narrow strip of oedema. All my organs, when tested, were quite normal, and the poetin is still being produced. As there is no gene mutation, I don't think anyone knows why I have both MDS and MPN, though MPN can be caused by inflammation, which could be the case with me.
Hmm you are a mystery indeed. We need Dr House. If it were me I would contact the doctor who spoke to you about your MRI and asked what the exact diagnosis is for what was found in your spine like what is the exact name of the condition. Or your hematologist may be able to relay that information to you. But I would want to know the name of it so I could research it. One thing I recommend to anybody dealing with these diseases is always get your blood work results....doctors sometimes leave out vital information. You can also keep track of trends. Request a copy of your MRI report and it may have the name of the diagnosis in there.
What I have learned from MDS/MPN crossovers is basically most MDS patients have low cell counts with abnormally formed cells. But MDS/MPN patients have abnormally formed cells with high cell counts. I would think the MDS/MPN crossover is the better one to have because the abnormally formed cells don't do their jobs correctly so at least you have extra cells to do the job of the bad cells. (Because not all the cells are abnormal.) Sorry if I'm going on and on but I have researched the hell out of MPN and MDS. I'm assuming your hematologist ruled out B/12 and folate deficiency because it will cause your blood to appear dysplastic but if the deficiency is treated the dysplasia will correct itself. It's crazy...I saw it once when I read a blood smear on a dog with those deficiencies. The cells were completely abnormal. Anyway, I hope you can get your pain under control because living in pain is no way to live. ❤
You're right. Living with pain is no way to live. I asked the consultant (I assume that's what I have to call him, as he assessed me but doesn't "see me regularly") whether it was osteoporosis and he said no. I have my normal appointment on Monday with the member of his team and I will see if she knows. I would research the hell out of it probably. I have already tried but got nowhere, so perhaps he doesn't know. I have my haematology appointment in three weeks so hopefully I will also find out more then. I am afraid my bloods will have got worse with all the stress I have been going through.
I'm not sure whether my haemaglobin and platelets balance each other out. I have never heard that rising platelets are helpful to a lack of red cells but I do think it's common. It was the physio consultant who referred me for the MRI on my lower spine but because of my history, the radiologist did the upper back as well (T4 is "triangulated" and I have scoliosis) And no, I don't have any B deficiencies. Do you have MDS/MPN? What is your interest in it? I was diagnosed June 2019 by lots of blood tests and then a bone marrow biopsy.
Well you are correct...there is no benefit to extra platelets. I was referring to the white blood cells mostly. Do you also have a high WBC count? My interest in MPN/MDS is a long story but I will try to make short.
I used to work as an oncology technician at an animal hospital. Part of my job was to read the blood smears for the animals that were receiving chemo. Well one day me and the other technician that I worked with became curious and we wanted to see what our own blood looked like under the microscope. When I looked at mine I noticed I had a lot of platelets I also noticed that some of my white blood cells didn't look quite normal. I brought it to my doctor's attention and it led to me being diagnosed with my MPN.
My bone marrow biopsy (over a decade ago) was fairly unremarkable but I did have a megaloblastic change in my sample which can be a sign of MDS. I no longer work in the veterinary field but I do have a microscope at home and the proper stains that I need so that I can look at my blood anytime I'm worried. My neutrophils often look dysplastic. So far no lab has made mention of it but that doesn't surprise me as most samples are read by machines and even when they do look at a blood smear they tend to scan quickly. I've looked at thousands of blood smears so I definitely know what a normal neutrophil looks like. I expect one day to get a diagnosis of myelodysplasia. I am a complete cell nerd. I don't trust doctors because, well, my doctor hadn't been telling me about my abnormal blood results for years. It was me looking at my own blood that led to my diagnosis. Thats why I always get my results now. Oh, I don't think I said my current diagnosis is CALR ET.
Please don't stress about your bloodwork. I try to remember that worrying about something never helps the outcome so just try to avoid it. Easier said then done I know.
Aah I get you! That is an amazing story. You would never have been diagnosed if you weren't working with animals! Mine was diagnosed because I had a loud heartbeat in my ear, didn't speak to my normal GP but to a better one, and he sent me off to the Haematology department. My neutrophils and other bloods are so far normal; it's just the haemaglobin and platelets that are a bit crazy. My platelets are also ET but there is no gene mutation. I asked about that last time I had an appointment.
It seems to be "all change" in the health service. I have a new physiotherapist from the one I have been seeing on and off for the last three years, and now, my haematologist has disappeared from the list.
I don't really stress anymore about my bloods; it's just the way my partner is behaving is stressing me considerably and I know that can have an effect. We'll see. It's just not having anyone to talk to that makes it a bit hard sometimes.
I’m so sorry you have been experiencing such pain and discomfort. In your position I would be quite wary about pursuing a remedy until I’d discussed the assessment / scans thoroughly with my specialist MPN haematologist.
MPNs are such a niche disease that it is unlikely other more general health practitioners would have the depth of knowledge to assess the extent to which your bone pain is related to your MPN - and what the safest and most effective course of remedial action might be. I note that your physio has (very appropriately) passed you on to your haem team. Perhaps worth holding off making further appointments until you have spoken to them? Wishing you well.
Absolutely. My partner is controlling. I don't trust the GP as she keeps referring to the condition as anaemia. I only got a shielding letter by registering with the government. Am planning to change GPs soon. I've just been to collect his prescription and she has prescribed exactly what he said didn't work! Thanks for your good wishes, Maggie
Hi Ebot, When I was diagnosed, it was MDS that was the main thing, not MPN, as there was no literature about it, after all, it is the MDS - refractory anaemia with ring sideroblasts that is the cancerous part. It didn't affect me much at the time, but when I went home from the hospital, and began to absorb what I had been told, I became quite anxious about it and went back to sorting out my funeral and thinking about changing my will - all that sort of thing. It is only now that some information has been available about MPN, and the number of people who seem to have it, that I have found out more and realise that platelets react to other health issues, whereas MDS stands alone. I refer to the crossover as a condition but I am well aware that people who have had it for a long time may find it challenging (I belong to two support groups and have met more people than a GP would come across in a lifetime), especially when it progresses to leukemia. I am only assuming that the MPN is related to the pain - it might be the MDS or both. I have yet to find out. Are you a victim of this condition, too?
Gosh that does sound challenging. It does reinforce the idea that you need to be in the hands of specialists who are at the top of their game. I’m not quite clear about whether you have a definitive MDS diagnosis and a definitive MPN non diagnosis. Or whether an MPN has never been part of the equation as far as your haem team are concerned. I’ve got plain and simple PV so I’m not up on MDS or it’s relation with MPNs.
From what you’ve said it seems like it would be good to have your condition managed by haematologists familiar with both conditions and their possible interrelationship.
I’m not sure how long ago you were initially diagnosed with MDS but I’m assuming it was a very long time ago as there has been plenty of really good, accessible literature around on MPNs for a decade or more and organisations like MPN Voice have been up and running for about that period. Although of course ten years ago MPNs were called MPDs and not discussed in terms of blood cancers.
Just woken up! I've been diagnosed since June 2019 and I have been diagnosed with MDS/MPD which is how they put it when you have both conditions. It's termed a crossover or overlap condition. The hospital gave me an MDS booklet, which has now been revised, but at the time they had nothing on MPDs (MPNs). They have only recently been classified as cancers, which is why some GPs haven't caught up yet. I soon found MPN Voice and have a good understanding of my conditions. My variety is also called RARS/ET but there are many other forms of MDS/MPN. Myelodysplastic syndrome is when there aren't the right number of healthy haemaglobin cells and Myeloproliferative syndromes are when, in my case, the platelets are making more than enough. So when I have my blood tests done, it is mainly the haemaglobin and platelets that we are interested in because everything else has so far been normal.
I assumed that my back pain was due to a heavy lifting incident and then repeated twice more over two years, with much less of the "heavy" but this week, I have been given news that makes sense and an MRI picture that shows clearly what has happened to my spine, or part of it. I didn't think my bad back was caused by my blood condition. But apparently, it is.
I think the surprise is that the overlap is so rare that MPNers and MDSers are often not aware of the existence each other, especially as the conditions are both rare in themselves, and there are so many variables like PV that you have, full-blown leukaemia and all the degrees in between. I belong to a support group of about 30 people and none of them have exactly the same condition. So far, I have met one other with the crossover but he was so new to the group and confused, that he was really not aware that for us to meet was exceptional. Then we had Covid, and no groups have met since that day.
I'm pretty ancient, and MDS usually develops in the elderly. It's hard to tell how long anyone has had it except by when one was lasted tested for any reason, but I suspect the MPN might have been around longer, just not picked up as the proliferation isn't much above the normal range. I hope this clarifies things a bit for you.
I have had 2 fractured vertebrae in my lower spine and MRI shows changes to vertebrae in the upper spine. I'm in constant pain from the lower ones, and the upper ones feel sore and tender to the touch. I feel certain this is all due to the pv
I've got a "triangulated" vertebra in my upper back but it only hurts really in hours of violin playing, which due to COVID, I have stopped. The three lower compression fractures have just been diagnosed, although the symptoms were there over a year ago, with the worst pain being experienced over the last four months (after bending down to wash my face).
I have not been diagnosed with PV, just ET and MDS. My lower ones are tender to the touch (I can't reach the upper one). I've got my appointment with haematology in two weeks, so we'll see if there's been a progression. It has taken a long time to figure out the possible link. You would have thought, with the possibility of a link between them, that my haematologist might have done an MRI a year ago when I hobbled into the consulting room with a stick. She asked me what was wrong and I said "Slipped disc" but knowing that slipped discs were rarely that. When I say the pills I take are for the pain, she asked "what pain?" I have a new haematologist now - no idea how qualified he is.
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