Hi Guys, I have recently had an mri of-both feet and ankles due to severe pain which is greatly affecting my mobility. The scan drew attention to edema of the bone marrow between my toes.
I just wondered if anyone else has had same issue and whether it could be related to an MPN. I have too many red blood cells, cause unknown so was hoping there wasn’t a connection.
Kind regards
Aime xx😻😻
Hi Aime
How strange ? Last June I thought I had pulled a muscle at the top of my leg - over the course of a week this niggling pain became increasingly sore to the point I could hardly put weight through my leg . Long story short, after MRI scan it was diagnosed as Transient Osteoporosis . This is similar to you- bone marrow oedema and loss of bone density in my case in the femoral head and top of my femur. I had to keep the weight off it and take strong painkillers ( MST and gabapentin for nerve pain) . It took approximately 5 months to
settle and the repeat MRI scan in early December showed a complete return to normal bone density and no oedema . Unfortunately in late December I got it in the other hip so am now just recovering from it . Both times I had to be on bed rest and crutches being advised not to weight bear as it would just exacerbate the pain plus a risk of fracture with the bone having lost so much density. The Orthopaedic Consultant I saw and my Haematologist could find no link between my PV, taking Ruxolitinib and the Migratory Transient Osteoporosis . I hope like mine , this episode you are experiencing soon settles and your bone marrow oedema settles back to normal.
Hope this helps
kindest regards
Dianne xxx
Thank you Dianne. It's good to know because I was visualising arms and legs growing onto this diagnosis if related to blood counts as well. Sounds like I'm going to need ops on my short calf muscles and tendons on both legs plus perhaps some injections to reduce the toe pain. Time to have fun again as my consultant thinks I've got carpal tunnel again in left hand - had the op on both about 19 years ago. Never mind, I like to set myself challenges!!xx hope ur feeling as well as possible. Kindest regards Aime. Xx🙀🙀😻😻
How awful Aime and Dianne,I have not been 'on'the site for a while,
many changes for me ,enlarged spleen now and signs of M F from the dozens of tests I have had recently inc B M B.
I too am having pain in right hip and painful toes,hip pain makes me shout out it is so severe,I guessed it was sciatica,shortly I have to have echo graphs and X Ray's.,maybe it is the bone marrow,started on Rux now but pain and fatigue still there.Best of Luck with it all ,both of you.
Sally
Thanks Sally, e hugs sent to say, I’m sorry you’ve got the pain and fatigue but thinking about you. Aime xx😻😻
We do seem to go from bad to worse don't we.I used to feel better after exercise,dogs,mares etc,but not any more.I suppose all illness progresses as we get older .My consultant has advised that I have vaccinations against numerous bugs,and that I am now fragile!!!!
I have been under his care for 10 yrs now,so he knows me well.
The pain???He thinks at my age I should not work with horses he is right of course I can't do much anyway...,and slow down a bit!
So sorry to read of your pain,it is so debilitating makes you tired ,irritable,not to mention miserable.Keep going. You always have,hope for better days.I lost one of my old mares on Friday,we bred her,were there as she was born.Had her 32 years,An amazing long life but I felt dreadful.....carried on it was hubbys B /day and Party for a lot of people........it kept away the tears.
Wishing better things for you Aime,thanks for your sympathy re my pains which I am sure are not as awful as yours.xxxxxSally
Oh Sally I’m so sorry about your mare. Our animals are part of the family and it’s so hard when they go. I try to say to myself that I’ve given them a really good life and they’ve given me a lot of pleasure and memories to cherish. Sending loads of E hugs. Love Aime xx😻😻
No one can say how much a person is in pain but you are definitely a shining example to us all of keeping going through thick and thin!xxxx
Thank you Aimee,yes they are family,Sophie was beautiful,a champion in many disciplines,then a top brood mare breeding champion stock for us.The en d of an era ,tears today now all the celebrations are over and people gone.But you are right. We do our utmost to keep them well and happy,actually better cared for than many old people.
You keep us going Aimee,I wish you relief soon from pain,Drs never seem to be too bothered do they .Would a spa water treatment help.I am too feeble to swim at the mo. but I walk in our salt pool,think it helps a bit,Need a child's ring tho to support me!Can you believe how 'old lady ' that is!!!xxxxxxxSally
Yes I go to a hydrotherapy pool twice a week which my joints love but my skin hates but you just walk down the steps and the pain lessens immediately with the warm water. E hugs sent.xx😻😻
I should do that,there is one an hour away,you have spurred me on.
I do get dreadful skin rashes,see a Dermo lady regularly who insists it is the drugs that cause it,I did think last year our salt water swimming pool soothed it,this year a rash on my chest that extends under breasts is so sore I dare not let water near,Showering is difficult to avoid splashing it too,the heat we are enduring makes it worse........what else can we get????e hugs back!S
Oh Inca
I am so sorry about you losing your beautiful Sophie . It ihas such a massive impact on your life when you lose such a beloved friend. Last year when I was experiencing all the problems and pain with my hip we also lost our beloved little Yogi. Yogi was our gorgeous little bichon frise - he was teeny tiny in size but massive in personality and was my little soul mate ❤ He was nearly 14 years old and like you said, he, like many of our gorgeous furry friends, had a charmed life was so loved by all our family. We are thinking of having another little dog but as yet I don't think I have yet totally got over losing Yogi plus I need to make sure my hip is better before taking on a rew cheeky little puppy !!
I know it is heart breaking losing a beloved pet but the love and joy we get from them is definitely worth the pain of losing them
Take care and keep healthy
love Dianne
xxxxx
Hi Dianne,
Thank you for your sympathetic reply.Losing a beloved horse or dog is so hard.People who don't have animals can never understand the grief.But they are part of our lives,like the human part of a family is.
It is difficult to think about a puppy when we are not really fit enough to cope.Two years ago we lost our much loved G S D,a super dog and guarded us well.Cutting a long story short ,we bought a G S D puppy,I tripped over him when feeding him with our other dog and fractured my femur!!!So there is that risk with our hip pain that makes us awkward.
My daughter in U K,has just rescues .All are Lurchers of various sizes,gentle,easy to look after and idolise her.After exercise in the morning ,they sleep all day beside her in her office at home!!!I was born in North Yorks ,know Guisborough and the moors and coasts well there.I think I saw you at the Newcastle Forum last year,but didn't get chance to speak to you.
I am treated in France,diagnosed here 10 yrs ago,going thru masses of tests just now as P V progressing to M F worry ,on Rux now was on Hydrea before.I thought my hip pain was from riding all my life,but reading posts lately,maybe it is the bone marrow,lots of other weird pains too that I can't account for......except getting
older of course....!
Think about a rescue,you need a warm loving dog to comfort you.
Could not cope without mine,the pup who caused my fracture is now a great dog!!!
Best to you Dianne ,Sally xxx
Wow the more I read......I mentioned to my doc the same problems. I have bursitis so it’s possible the pain is still coming from that but sometimes you gotta wonder. It’s worse at night. ... keeps me awake a lot. Good luck.
Bone pain is the worst symptom of an MPN. I have terrible back and hip pain to the point I now use a rollator which has a seat so I can sit down if needed. My hubby bought me a new mobility scooter Friday so I am awaiting delivery. Can’t wait because it looks like a Vespa scooter. If I am getting old I won’t be doing it gracefully lol.
Hi jillydabrat, sorry you are in the wars too. I’m starting to wonder if I’ll need a mobility scooter before long too. E hugs from Aime xx😻😻
Look at the GreenPower 500 on amazon. This is what I am getting. It even has a phone rest so looking forward to. Blasting out some “mod” music lol
Will do, thank you. Kindest regards Aime xx😻😻
I am considering a rollator as I have really bad arthritis in my knees and find it very painful to walk, I had a go with a neighbours and it felt ok, I just need to get courage to use one in public, although it will mean I can get out and about more. What make is the scooter, one of those is also on my list. If I've got to have one I don't want to look too much like an old lady.
Hi Lizzie, the scooter is. GreenPower 500. Look on eBay for the best price. The rollator is also for me to hold on to when you get that sudden dizziness. Going back to the scooter, it has a maximum weight load of 400lbs and can sit two people easily so my hubby will be riding pillion lol. It has two foot rests that fold out for the passenger. Can’t wait to try it xx
I think I'm going to have to give in and get at least a rollator as my knees are so bad, I often veer to one side or more or less turn without meaning to so it would certainly help keep me upright and going in the right direction!
I do need both knees replacing, the surgeon said he would consider it if my platelets stayed stable for several months, and I lost a bit more weight. Platelets stay stable for a while then go mad for no particular reason so no chance yet. (Don't mention the weight - I am trying!)
Enjoy the scooter. xx
Hello Aime.
So sorry to hear of yet another problem that you have to deal with ! You certainly don't do things by half do you,
I had hoped you had had a definitive diagnosis to your blood problem , I know you had to seek help elsewhere to try to find what the problem was. So they couldn't come up with the answer?
Diannes reply sounds positive , something to run past your medics, the knowledge and advice on this site is just so amazing. Someone always comes up with helpful informative suggestions, as you yourself have done so many times for us.
Oh dear you are challenging to your docs🙄!!!! , as we say "if it's no one thing it's t'other" . I must say as you have often said its common to blame all our various maladies on our blood problems, most of the time we have to rely on ourselves to dig for information so we come to our wonderful forum.
I do so hope you can get help for your pain soon.
Love and best wishes Sandy xx
Hi Sandy, thanks so much for replying. My red blood cells are still too many but I haven’t got jak2 and Xeon 12 mutations. My bone and joint issues seem to progressing at an increased speed but I’ll just have to deal with it. E hugs to you, Aime xx😻😻
I had pretty bad pains in my ankles and feet for over a year...it was affecting me at work and was making my life miserable. I never had a scan done though. My doctor put me on Cymbalta and the pain is almost completely gone. Definitely a miracle drug for me.
Thank you clubdino, that’s good to know. Kindest regards Aime x😺😺
Hi, Aime, there’s not much more I can add but I hope you find the answers you are looking for and that you find relief soon.
It sounds awful but I hope with the proper treatment, all will be well.
Thank you. Aime xx😻😻
Bone marrow biopsy 
BMB (Bone Marrow Biopsy) 
Bone Marrow biopsy
Bone marrow biopsy
