Last year I was admitted to hospital while on holiday in Australia with a blood clot in my portal and splenic vein and an enlarged spleen , and clots on my lungs developed while in hospital, after a bone marrow biopsy I was diagnosed with MPN, but I’ve been told by my haematology consultant that they don’t know what one I have yet , so I’m a bit in limbo at the moment,
A year on , and I have had another scan and shows that I still have the portal and spleenic clot and my spleen is enlarged still, I was started on rivaroxaban when it all started and have been told that I’ve got to take them for the rest of my life , and still at risk of clots which scares me a bit .
I was wondering if anyone out there has has something similar and I have terrible pains in my leg worst at night is this all to do with this condition
Would be good to here other people’s view
Thanks kim
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Kimmy53
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Hi I’ve had Myelofibrosis for 10 platelets are always high my main problem is fatigue and aches in legs it’s like the flu so I do think this is part of the condition Try not to get too overtired as I think you end up with restless legs .Do you take aspirin for blood ? Hope you feel better soon Diana
I’ve stopped working full time if I walk too much my legs ache it’s hard to get it right I don’t drive so have to walk everywhere would try not to do too much walking although I keep getting told to try and walk more but then end up in bed the next day if I do too much not sure if that’s any help 🙃Diana
Hi Kim, welcome to our group. I’m afraid I don’t have the same problems as you with my mpn except my liver is slightly enlarged. I have fatigue & heat intolerance. But it could be helpful for you to tell us your age, what platelet levels are and if you have any abnormal blood labs. Also, have you been evaluated by a specialist in MPNS? That’s extremely important, especially early on and when your labs &/or symptoms change. There are a lot of us with a range of experience. Perhaps if you give us that info you can get some better replies. It’s also helpful to have your topic, or heading as specific as possible when you post. People on here post for a many reasons: all kinds of questions, looking for advice, wanting some support, needing to express irritation, frustration, sadness, anger.
Spleens are often enlarged in people with MPNS. Patients with Myelofibrosis can eventually ended up with really large spleens because their bone marrow becomes so filled with scarification that there isn’t room for blood cells to be produced. You don’t say if your leg pain is in your bones or muscles. Many of the members have leg pain but I think the type and causes vary. I’m afraid I’m not familiar with your medication so can’t comment on that. The reason I asked your age is that being at least 60 puts you at a high risk for blood clots. So at that age, if you’ve already had blood clots docs usually put patients on things like hydroxyurea. It may be your medication works in a similar way. It’s not clear to me how long you’ve had your blood clots. It can take them a few months to disappear. I’ve had them in my lungs & elsewhere which is why I was placed on a blood thinner (Eliguis), baby aspirin & hydroxyurea to keep my platelets at a low enough level that my risk of future clots is less. You’ll fine people on here to be very supportive & friendly. The best resource I’ve found to learn more is NCCN, a national cancer group in the U.S. If you google NCCN, MPN you should get to this information. Hope this helps a little. Katie
I was diagnosed last April 2018 and put on rivaroxaban which is a blood thinner , I don’t know what my platelets count is, my consultant said that I just need monitoring at the moment , and to wait to see what type I will end up with
The scan I had done last month shows that the clots are still there , that after a year and said that they might not dissolve, but other channel have opened up to aloud the blood to flow to my liver
Hi Kimmy and welcome to our forum. Is your haematologist going to carry out any further tests to determine which MPN you have? It will help you to know which one so that you can move forward. Many people do get pains in their legs, some people have the pain deep inside the bone, others have terrible pains in their calves, which is all very debilitating. It is very scary when you are told you have this for the rest of your life, but hopefully you will be encouraged by the replies you get from the lovely people on this forum and by reading previous posts. There are a lot of us living with MPNs and have been for many years. Kind regards, Maz
I was diagnosed in 2015 with PV. I had already had 3 DVT’s but nobody had queried an MPN link. After repeatedly going to my GP with chronic fatigue, joint pain and loss of feeling in my feet, I had a follow up from surgery and I was asked if I had heard from my GP as they had written to him with concerns about my blood tests.
The DVT’s were bad enough but I also had 5 miscarriages with no explanation. Now they tell me my blood would have been to thick and sticky to get through the tiny placenta blood vessels. Heartbreaking to think a simple tablet would have saved my babies.
I now treat any pain in my calf and groin with caution
GPs are too quick to dismiss Our pains , I went to the doctors with pains in my stomach and she told me it was an inflamed stomach, I was unable to eat anything for 3 weeks , but insisted it was an inflamed stomach , so I still when on my holiday of a life time to Australia, but when I got to Australia after a few day the pain got so bad I when to hospital and they did a scan straight away and found the portal and spleen clots
So sorry to hear your dream holiday got off to the most terrible start. I get angry and afraid that medical professionals can get it so wrong or refuse to investigate. One day there is going to be a horrific story on here that a serious situation was not taken seriously and investigated. I am just waiting for it.
Hi kim, I have a similar history, July 2018 I had 3 weeks of awful abdominal pain, vomitting and diahorrea, unable to eat or drink, eventually admitted to hospital and following ct scan found entire portal vein thrombosis, including splenic vein, caused ischemic small bowel and splenic infarcts. Following bone marrow I've been diagnosed with ET(triple negative). I take warfarin(this will be long term,basically life) and hydroxycarbamide, because the fact you've had a thrombosis puts you in the high risk category. I'm 48, fatigue, leg and arm bone pain, general muscle aches and a feeling of general weakness are all on going, but you do learn to deal with it most of the time. I've reduced my working hours, temporarily i hope, and occasionally things do get you down, but you start to value the important things. I try to sit with my legs up as much as I can, it seems to help a little.
Hi again, I’d encourage you to see a MPN specialist. If your platelets are too high you’re at continued risk for blood clots, even if you’re on blood thinners. Is that something you’d be willing to do? That way you’ll get an accurate diagnosis & most importantly you’ll be put on the proper medications. Blood clots are one of the biggest causes of death & permanent disability for MPN patients. That’s why I had to get on hydroxyurea in addition to my blood thinners. I almost died from blood clots filling both my lungs and it did so much damage I now have to sleep with oxygen & have to use it 24/7 when I have a respiratory problem. But I’m one of the lucky ones. Some on here had blood clots which caused heart attacks & bad damage & others bad strokes with permanent damage. I had TIAs but no permanent damage from them. But that’s why a proper diagnosis & treatment plan are necessary to keep you alive. And because MPNS are rare, only the experts truly know how to treat us. If you don’t have an expert near you why not schedule an appointment where he or she is and then ask them to work with your local doctor. I only see my expert every 6 months but my condition is stable. I don’t mean to scare you but just be sure you understand the importance of appropriate treatment. Katie
Hi Kimmie53, I’m really sorry to hear of your distressing story.
There is an MPN Specialist at the Christie Hospital in Manchester; Professor Tim Somervaille. This would be closer to you than London. It would be well worth it to make an appointment. I don’t know how that works with the NHS when you live in Wales though?
I agree with Katie. You should be considered ‘high risk’ due to your recent thrombotic events. Therefore, you should be on some kind of cytoreductive therapy. Watch and wait is risky! Have you had a bone marrow biopsy? This may well give your haematologist the answer as to which MPN you have!
Hi Mary yes I had that done when I got back home, that’s when they diagnosed me with MPN but don’t know which I will get , I’m due to see him again in September so I speak to him again and ask more questions
Hiya Kimmy I to have portal vein thrombosis I was admitted to hospital with the exact same as you I have mylefibrosis Hal 2 positive I was 24 at diagnosis iam now 34 I still have my clots they never went despite blood thinners I also developed enlarged varices in the throat and stomach and suffered horrendous bleeds although I have banding to help this I hope you get your answers soon it’s a very worrying time good luck xx
Flying is generally risky for people who form blood clots. If you do fly be sure to take precautions: support hose, walk around as much as possible, while in your seat do exercises with your feet, legs, hands & arms, stay well hydrated-before, during & after. Can you go to one of those locations to see a specialist? Then that specialist might work with your local doctor to make sure you’re getting the proper care. Maz may know if there are specialists in Wales & if not, if you can see one in England. I’m in the US & don’t know much about your health care system. Best of luck, Katie
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One year on. and still happy🌞
New Dx of splenic cyst. I am ET, JAK2+ on HU and 81mg aspirin 2x daily. 
Found Jak2 mutation with normal bloodwork
clotting whilst on warfarin for clots in lungs. 
PV jak2+ and new to all of this! 
