Morning all!
At my last blood count last Monday I mentioned to my Con that I have developed a weird pain/pressure in my left calf and so I’m off for an ultrasound on Monday to rule out DVT. My Con, doesn’t think it is but wants to be safe. I have not been started on any meds yet.
Anyone ever developed DVT? What does it feel like and what is the treatment like?
Hope everyone is well
Kerry 😊
Hi Kerry
I had a DVT and Pulmonary Embolism 4 years ago before I got diagnosed with PV.
Everyone's experience can of course be different but for me it was not text book. The the pain in my calf was only dull - not intense at all. Also, my calf wasn't really swollen or hot. Because it didn't fit the text book DVT signs and symptoms we didn't recognise it and just thought it was a pulled muscle. Subsequently, I didn't seek medical advice and ended up with the PE. Basically, what I'm saying is, if you have any concerns please seek medical advice . After a day of this cramp type leg pain I suddenly started feeling decidedly unwell, had shoulder to pain ( typical of PE) and had difficulty in breathing. By chance my daughter who is a neuro physio, was staying with us . She recognised the symptoms, called an ambulance and within 8 minutes I was on my way to our local A&E where I was treated immediately and successfully for DVT and multiple bilateral PEs . I was extremely lucky and have my gorgeous daughter to be forever grateful to - she undoubtedly saved my life! After a 10 day stay in hospital and a 6 month recuperation period I made a full recovery and was subsequently diagnosed with my Polycythemia. I really don't want to scare you or anyone else Kerry, but I just want you and everyone to be vigilant. I was a tad cavalier, thinking I was invincible and very good ( not!) at self diagnosing ! I think being a nurse I knew all the s&s of DVT and I didn't fit them so just put up with the pain in my calf . Obviously now having been diagnosed with PV I would always take myself down to A&E pronto if I had any unexplained soreness in my calf or any sort of chest pain or difficulty in breathing . Always better to be safe than sorry 👍💕
Take care and hope all is well - please keep us updated if you can
love Dianne xx
Thanks for the reply Dianne!
I’m ET Jak 2 +, on Aspirin and Pegasys a little over a year now. I’m in for an ultrasound on Monday, only started feeling this pain/pressure a little over a week ago. So far no other ill feeling but it seems to be spreading up my leg from the same point of origin, pain a bottom of calf pressure all the way up to above my knee now. No swelling or redness to see but a new bruise around the point of origin. I haven’t knocked or banged my left or strained it through exercise, so not sure where’s it’s come from only that it started coming on subtlety after I flew back from holiday (only 3hr flight tho) I’ll wait and see what they say.
But thanks for the info and concern. I’ll update once I know more 😊
Kerry
It definitely sounds suspicious Kerry - if it gets any worse please go to A& E . Always better to err on the side of caution
Dianne
xx
Thanks Dianne, I have never had anything like that yet but who knows what might happen when I get a bit older.
You asked about symptoms and treatment - I had been in hospital for 10 days with pneumonia due to very rare reaction to Pegasys. 4 days after discharge I had a very painful ankle in the evening and a disturbed night. By morning lower leg very swollen. Phoned hospital and went straight back in. Doppler scan done and dvt in leg diagnosed. Immediately put on heparin injections and in hospital for another week. I could hardly walk for pain. Discharged with blood thinner tablets which were changed a year later to Apixaban which I will take forever - not a problem. Wore pressure stockings for 2 years. Again I got used to them and just wore trousers. If you are at all concerned - don't delay in seeking reassurance. I was embarrassed about having to contact hospital so soon after discharge but it was the right thing to do. As I waited in queue for doppler scan I heard people talking about having just been on holiday flights.
I have had 3 DVT’s. My first started with pain in my calf and very mild swelling. I had none of the redness or heat in my calf. When I was scanned they found a massive clot so I was very lucky. I was put on warfarin and some other medication I cannot remember for a number of weeks. When I stopped taking it after a few weeks the symptoms came back so I was put straight on to warfarin again. Again, after a few weeks I stopped having the meds and, again, after a few weeks the same symptoms came back. This time I was put on warfarin for life. Thankfully I haven’t had one since.
I didn’t know I had blood clot in my groin. Felt like hip pain. My whole left leg got very swollen and turned purple. Again it wasn’t suspected to be a DVT because they only happen in the calf? But a scan proved to it be large clot blocking 3 deep veins and partially blocking another 3. If in doubt, get it checked.
I had a similar experience where I felt pain in my calf towards the back of my knee. Ignored it for a week or so thinking it was a football related muscle strain. During a routine physio appt I told them of the symptoms and was advised to go straight to A&E. Still didn't take it seriously but eventually went. No swelling or symtoms other than a dull ache. All blood tests for suspected clotting we negative, but due to my ET as a precaution got sent for an ultrasound.
Turned out I had 3 detached blood clots above the calf. Now on Rivoroxaban for the foreseeable future, as well as Pegasys Interfron for my ET.
My advise is to always insist on the ultrasound asap.
Thanks guys, I’m in for an ultrasound this afternoon. It’s such a weird thing because so many of you have said you didn’t fit the ‘profile’ ie swelling/red/warm to touch. Ache and pressure are still there and it seems to be stretching up my leg. I’ll update once I know more.
Kerry 
Hope you done ok with the ultrasound You have give me food for thought now I have had aching calves for couple of weeks mainly left calf still having twitches. I gave been putting it down to a lot of walking but feel bit worried after reading posts about symptoms not been typical. The problem is now I am trying not to go to Docs as due to having breathlessness and no diagnosis yet Medics who I have recently seen have made me feel bad I get the impression they think I am fully hypochondriac I admit to suffering anxiety with having ET but its not always anxiety as people make out at times my symptoms can be real and not down to anxiety. But hey ho not having too bad a time at mo. Here to talk to anyone if buddy needed I have had ET for 9 yrs now. My platelets are climbing near to 900 even after hydroxy been upped aaahhh Have gud days Have bad and anxious days but I am fortunate can see others have a really hard time. This site is brilliant The people are amazing Thanks for all the support I get from here Best Wishes All xxx
Evening all!
so today did not go as planned at all!
I arrived in work this morning with my leg feeling really odd, I had a wave of nausea and a sweat breakout, but recovered quite quickly. After about 40 mins of work, (computer work) my whole leg throbbed and turned to extreme pins and needles like my whole circulation had been cut off this coupled with a huge wave of nausea, very prominent rapid heartbeat, cold clammy sweats and a stiff neck, my work colleague called an ambulance.
I ended up in a different hospital from where my ultrasound was booked, had 3 ECGs, all seemingly improving throughout the day, blood pressure didn’t improve as much, by the time I got to see the Dr all ultrasound time slots were taken but they have put me on a blood thinner for the night (Claxidane?) and scheduled me for the morning and sent me home.
Not presenting as typical DVT, D-Dimer normal, no visual signs and they carried out a neuro test, all good. So apart from a rather dramatic exit from work this morning, I’m none the wiser!
Anyway, I did feel like a bit of a hypochondriac by the end of the day, but at the time I thought I was about to have a stroke!!
I’ll update again after the US tomorrow.
Kerry 
Awe bless you Pleased you home and okay Best Wishes x
What a scary day Kerry - you're not a hypochondriac, just very sensible to get it all checked out . Good luck for tomorrow and hope it's good news.
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