Update Prefibrotic mylelofibrosis. Blood clots

In agony can’t sleep - due to have scan of left leg as 99per cent surety I have a clot - had heparin shot today at local Ambulatory dept. Scan tomorrow anyone had a clot… the pain is horrible

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Oh @Jola13 the pain does sound horrible.
How are you feeling today?
Please do tell them how bad the pain has been.
Please do let us know how the scan goes today and I hope that you get a definitive diagnosis and the way forward, perhaps be pleasantly assertive.
Look after and be kind to yourself

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Yes I have had 3 in my lungs 1 in my shoulder and 1 in my neck from my picc lines and I can say they are very painful and made me feel very poorly
I didn’t realise I had them until I had to call an ambulance because I couldn’t breath
My neck I thought I had tonsillitis and couldn’t move my head and called an ambulance where it was thought I had sepsis and found the neck clot

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Just got home after a whole day spent in Hospital scan came back negative. Two cocodamols 30/500g - took a little off - the edge of pain - am now awaiting an mri scan of lower spine - directed from Neurology department - St.Mary’s -

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Hi @Jola13. I’m sorry to hear you’re still in a lot of pain. Hopefully you won’t have to wait to long for the scan.
I hope you manage to get a little more sleep tonight :blush:

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Hi @Jola13 what a day, I expect you must be absolutely exhausted and drained after yesterday, I would have been.
Sometimes I can get too tired to sleep, I hope you had a better nights sleep.
How are you feeling today, look after and be kind to yourself?

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Hi Erica
I was checked over and they could not find a clot which is a plus - but as I also have neurological problems , I am to have an MRI They were using caution and tested me for DVT as I am high risk. I also got a follow-up call this morning which was nice. I already rattle with medication am fighting to lose weight which I put on over the COVID period plus now this new diagnosis of Blood Cancer. I have to book an MRI through the RNOB. I have had enough of hospitals and just want to get on with life - throw in the mix - trying to sell our house with which we have had letdowns and move to the Broads.

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Oh @Jola13 you have so much going on, I know with me it just gets all to much.
Some good news and still some uncertainty.
I found selling our house and, yes, the letdowns and downsizing was such a stressful time and I did not deal with it well.
Moving to the Broads sounds lovely to me.
I am certainly thinking of you, just take it one day at a time and really look after and be kind to yourselves

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Hi Erica Have been up since 1am now 5:15 in pain in
Left pelvis extending down to knee - alternating from searing and dull deep ache - it feels like something is gripping my calf. Is bone pain normal and it’s Just on one side. I’ve sent all the hospital notes from last week to my GP who I talked to at length last Friday. He is very annoyed that I am being ping ponged back and forth. When will this end ? Trying to be positive. Exhausted :sleeping: from the pain. Jola x

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Oh @Jola13 what a horrible, exhausting night you have had, how are you feeling now?
Sending you loads of good vibes xx

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I’m laying in bed surrounded by by my cats the sphinx is on top of my under his blanket - feeling shattered

Jola Denby-Ashe

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Oh @Jola13 I bet you are shattered, but cats can be so therapeutic. xx

Hi @Jola13. I hope today has been a little better than yesterday?
Fatigue can be so debilitating cant it. I hope a day of resting helped.
Sending lots of love X

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Hi Erica

Happy New Year!

I am still in excruciating pain if I mobilise. I finally received the results of MRI I had in December of my pelvis/hip the diagnosis is a complete tear of rectus femoris tendon - the long tendon which extends from hip to knee - not sure how on earth I did this as I am not an athlete or footballer laugh out loud… but it explains the excruciating pain I’ve been experiencing. Takes 3-4 month to heal if pain continues they operate.
I am currently in my adjustable bed again surrounded by cats as the only position that seems to ease the pain is horizontal. Hubby in States until next Wednesday so so home alone with the 9 cats. Best Jola xxx

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Oh @Jola13 no wonder you have been and are in excruciating pain and unfortunately it will take time to heal.
Wow that tendon certainly is long.
It must be hard for you with your hubby in the States.
9 cats sounds a handful to me.
Please do let us know how you get on and be ever so kind to yourself