Today I had a haematologist appt….. - Hughes Syndrome A...

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Today I had a haematologist appt…..

Ozchick profile image
9 Replies

I have had my chest pain investigated and it appears that I have had a clot on my spleen. I was a bit gobsmacked!! it will resolve in its own good time apparently but when I also told him the dizziness and zig zag flashes have put in appearances at the same time he has also packed me off to have an MRI next week and see him again with the results. I think he kind of wishes he never laid even on me!!! He still thinks the Rivaroxaban + Aspirin should be OK unless I wanted to change back to Clexane…….but then I still had a DVT on Clexane. He has also not ruled out micro clots in lungs adding to muddling the diagnosis a bit and so again I wait…….

I love this disease ;)

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Ozchick
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MaryF profile image
MaryFAdministrator

Hi there, it sounds like you were investigated in detail! Keep us posted. MaryF

Ozchick profile image
Ozchick in reply toMaryF

Will do Mary-Generally the doctors I now have looking after me are pretty good-it's only in ED I have to do the whole explanations…….I think they just go "another old dear who's panicked" and if initial tests are clear they don't look to scan up or down to look at where the problem might be. Obviously a spleen with no trauma *can't* have a clot! He did tell me that the pain I had-radiating through to the shoulder blade was pretty good indicator that spleen was involved if cardiac had been ruled out.

jetjetjet profile image
jetjetjet

Best of luck to you OZ

I get the __ you can't clot with the Anti's you are on - this is after shallow vein clotting and the last hospitalization i had 2 DVT'S in my left leg calf. ??? Hemo - want's to change my warfarin to a couple different Anti's with no proven track record ????

any ways the best to you and let me know how you make out

C & J

Ozchick profile image
Ozchick in reply tojetjetjet

CLexane does have a proven track record -"in most" people. I couldn't keep a stable INR on Warfarin and coasted along happily for over a year with Clexane.

How often are you getting tested? If only sporadic you could be below optimum and get clots. I've been happy with RIvaroxiban up until now and just await results next week. Hate the dizzy/flashes that are coming at odd times. I'm just wondering whether the cold winter we are having this year is also to blame. My right hand (one with Raynauds) didn't warm up at all the other day (hovered between blue and dark purple) and that in spite of having air con on and wearing gloves and heating pads. We didn't get above 16deg for a few days. I know, not the other side of the world's cold days ;) but generally in Winter it will get to the 20's or higher during the day.

pesi profile image
pesi

That's great that they are doing such a thorough job. I hope the results come back positive for you. Can you tell me more about the chest pain you were experiencing. I have been having some as well... Dr ordered an EKG and it came back clear and thinks it's stress related. Thought I would compare notes :)

Ozchick profile image
Ozchick in reply topesi

IF you have ever had PE's or Pleurisy it is a similar kind of pain. It's kind of behind breast and quite sharp if you take a deep breath. This time also radiates to the back. The first check in ED is always ECG and mine are always negative also, but it's a simple enough check to rule out Heart attack. Trouble is, APS comes with such varying symptoms for different people and just because one kind of test is negative doesn't mean you're going nuts ;) or a hypochondriac!

The very first time I had PE's I'm sure that the ED Doctors thought I was one of the above categories. As a last resort they gave me a CT before sending me home and afterward the doctor apologised when results showed bilateral PE's. Sometimes it's hard to fight for your cause but a doctor who understands the disease is a must.

pesi profile image
pesi in reply toOzchick

Thank you for sharing! Was the pain present every time you took a deep breath?

Ozchick profile image
Ozchick in reply topesi

Yes it was and still is but not as bad (or maybe it's the painkillers kicking in :)) Not looking forward to the weather forecast tomorrow-snow at 600metres. No snow here but we get the rain and icy winds. Coldest winter for three decades - may have to just hibernate for a bit.

pesi profile image
pesi in reply toOzchick

Yikes - that sound cold! It's in the 90s here and we're sweltering - record setting heat wave.

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