hi all. Recently in ED 2 days ago, with severe redness, swelling, heat and excruciating pain in medial left ankle with a possible blood clot. Repeat of same symptoms from 6 months ago, same location. Undiagnosed at the time due to international travel. Some systemic symptoms occurred at same time ie light headedness confusion, and some breathlessness. Was given a blood thinner injection which helped very quickly. Still slightly sore following day but much improved. Had ultrasound today with no evidence of a clot Anyone have any ideas or similar situations? Never clotted before. Post ET CALR 2 MF.
TIA Anita
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AnBee
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That definitely sounds like a MPN related thrombosis and/or microvascular symptoms. It sounds like you and your care team did exactly the right thing. If you are not already consulting with a MPN Specialist, now would be the time to do so. There are a few in Australia. mpnforum.com/list-hem./ Our friends at mpn-mate.com/ may also be able to help.
Yes I have been consulting with Kate Burbury from Peter Mac cancer hospital in Melbourne here. Heard yesterday she is leaving this area
( Chief Medical Officer Deputy of the Hospital now I think) and she has no more appointments before then. Nobody in Emergency had any idea and there does not appear to be any urgency in the oncall Heamatologist. No MPN people. I am searching for a new one now in Australia. Thanks for the directory. When I was admitted into ED they did a D-Dimer blood test with negative result. Could micro clotting not show up on a D Dimer anybody know? The ED Dr told me the blood thinning injection a few days ago could clear a small clot yet I am concerned it is in the identical location as the first time these symptoms showed up. No injuries no punctures no cellulitis.
Any ideas at all. I’m in limbo till I get another MPN specialist organised.
What you are describing certainly sounds like a MPN-related event. I would also be concerned about the lightheadedness-confusion-breathlessness. The fact that it occured at the same time is worth investigation. Ruling out a minor TIA would be indicated as part of the assessment.
Hard to say about the D-Dimer test. I suppose a minor thrombosis may not be detected by the test. Best to ask a MPN Specialist about that.
Given that this has happened twice, a change in treatment plan certainly sounds worth consideration. The focus should be on prevention of repeated incidents. This is something that a MPN Specialist can help with. Unfortunately, the emergency docs are very unlikely to know much about MPNs and how they should be treated. MPNs are too rare for most docs to have the KSAs to treat them optimally.
Hope you line up a new MPN Specialist ASAP. All the best moving forward.
My husband had a clot which started in the ankle and then moved up his leg. Some advice from the hospital he was given was not to have tight socks especially around their tops. He cut some existing socks' tops off but then bought some specialist socks designed for people with foot/leg problems.
2 days heparin injections in the tummy then apixaban blood thinner orally which he is still on 5 months later. His d-dimer was high, the clot moved up the leg to his thigh and is taking a long time to be broken down by his natural plasmin enzyme. ( he hasn't got an mpn)
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