Sticky Blood-Hughes Syndrome Support
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Upper body pain

Hi guys , I told you of my aches and Pains a few days ago . I didn’t get any better so off I trotted to my lovely Gp today . B/p high , palpitations, pains In my arms etc . So she took my BP which was above normal , then looked back through my notes , gave me a good examination. Anne she said you need to go on BP tablets , have a echo cardiograph , ECG and bloods . She thinks my slightly leaking valve may have turned into a trickle now . On more thing to put up with . APS has a awful lot to answer for 🙈.

Has anyone on here got the same problem and if so what have you had done xx

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Thank goodness your GP is on the ball and working out what is going on, I hope you feel better soon. MaryF

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I have had exstremely high bloodpressure before I was properly anticoagulated at a high INR. I have Pulmonary Hypertension together with two leaking heartvalves.

I now use Warfarin with an INR around 4.0 and still take my bloodpressure drugs but my bloodpressure is ok. Even with those bloodpressure drugs my BP was not ok at all earlier, as I was not enough anticoagulated.

I test my lung/heart every year with an Ecocardiography with doppler and see a Cardiolog.

I exercise and go up stairs (if I see a stair, I take the stairs and not the roller-band) and do not get breathless (more than other persons at 73 would be) and the Cardiolog and Lung-Specialist has told me that I must tell them when and if I get breathless!

Fantastic that your GP understands this! Hope he sends you to the best Doctors for this examination.

Good Luck! Please tell us how it goes!

Happy New Year of 2018!

Kerstin in Stockholm

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One thing though;

You should of course talk with the Cardiolog/lung-specialist if it is ok that you exercise like I do.

Kerstin

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You are a very wise lady keratin I would do the same

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Kerstin damn auto spell lol keratin is carrot 🥕 juice I think

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I too have a leaky valve. My physician Father passed in 1990, And was never diagnosed with APLS. But he did have what he called “quasi lupus,” with a history of DVTs and positive ANAs. He told me that I should ignore heart flutters as long as they did not result in breathlessness when taking a short walk, or if the palpitations did not increase in number after a short walk. Due to a divorce and complicated family politics I do not know the reason for Father’s death, so I can not conclude if this was or was not good advice.

I am off to Cleveland Clinic, weather permitting, in a couple of weeks for cardiology consults. We’ll see what they say,

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Hi Gina,

Good Luck!

Kerstin

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What has prof Hay said about your breathlessness and high bloodpressure?

Important that you are well treated with the right drugs!

Kerstin

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Hi

Nothing , he thought I had another underlying auto immune disease but all tests came back ok x

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You did the right thing Amy. I wish you well and have a happy and healthy 2018!

With good wishes,

Ros

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Well I was told I had slight mitral regurgitation They did a mitral valve repair and at that time they told me it was caused by Libman Sacks more then likely due to my APS. I never had pain like you did though, I had a stroke and voila..the investigation began. Good luck, make sure you continue on your prescribed anticoagulants. Cindy

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