mitral valve regurgitation - Hughes Syndrome A...

Hughes Syndrome APS Forum

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mitral valve regurgitation

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Hi can anyone on here ,tell me what symptoms they get with mild mitral valve regurge . I have just turned 64 i aso have mpn Et I have ectopic beats which i had in my early 20s could i have been born with valve problem ? regards Holly

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Lure2 profile image
Lure2

Hi catwoman,

Do you have Antiphospholipidsyndrome (Sticky Blood or Hughes Syndrome)?

This is a site for this illness. I have APS and have leaking mitralvalve and heartfailure caused by this illness and Pulmonary Hypertension.

Best wishes from Kerstin in Stockholm

in reply to Lure2

ooh No i clicked on someone who mentioned mitral valve sorry

Lure2 profile image
Lure2 in reply to

You are welcome. Good Luck I wish you!

Kerstin

Lure2 profile image
Lure2 in reply to

Look at the old question from Justlymostly, 8 months ago. Some answers to read there.

As you do not have APS like we have here you probably do not have the same background to your mitralvalve regurge. Anyway knowledge is power.

Kerstin in Stockholm

in reply to Lure2

I do have sticky blood due to high platelet count diagnosed as mpn Best wishes Holly

Lure2 profile image
Lure2 in reply to

Oh ............. so you are diagnosed with Antiphospholipidsyndrome? mpn I have never heard of. I am not medical trained only have APS and earlier problem with very high bloodpressure and microembolies (PE) ev giving Pulmonally Hypertension and heartfailure. It is not so common but I have it.

Have you done a heartcateterization? I have not done that as they do not want to touch me inside if not important and I agree with them and i feel fine and am not breathless. They always ask that. My status is rather stable I guess at present. I am on Warfarin and selftest with an INR of 3.2 - 3.8. Like to be at the higher number

Kerstin

Manofmendip profile image
Manofmendip

Hello

Do you have a diagnosis of APS/Hughes Syndrome? As this is a forum for patients suffering from that condition. It is not a general medical forum.

Dave

Herbs77 profile image
Herbs77

I have APS and had surgery to repair my mitral valve regurgitation last year by Mr Avlonitis at St Thomas' although it came as a surprise as I didn't think, or was aware that I had any real symptoms. All much of a a surprise.

Happy to talk more if you would like?

Hayley x

in reply to Herbs77

Hi Haley , i have a blood disorder called myeloproliferate Neoplasm ET jak2pos im at risk of strokes ,heart and clots so on asprin at minute will start chemo pill next month , i was also diagnosed with mitral valve through routine Echo for ectopic beats and fast heart rate last few years , i do not know how long i had the valve problem ,go for my next echo end Aug im worried because of risk factors with added blood issues How did your repair go ? All well i hope . i live in Kent and go to william harvey in Ashford for my heart best wishes Holly

justlymostly profile image
justlymostly

I too have APS and mitral valve regurgitation (amongst other things).

I was told on diagnosis(1998) probably caused by Aps but new consultant position "is probably caused by undiagnosed rheumatic fever in childhood."

Good luck

Julie

in reply to justlymostly

Hi Julie , i may have had mine from childhood ,the hospital cant tell it was mild on last 2 echo i have yearly but i worry all the time all the best to you Holly

Holley profile image
Holley in reply to

I was diagnosed with a heart murmur at age 23 (now am 46). I had mitral valve regurge. I also have Antiphospholipid Syndrome. Got diagnosed with APS after a complication to replace my mitral valve with a mechanical one. No one knew about my blood disorder until I got nicked in the carotid artery during the first attempt at heart surgery. Had strange bleeding so hematology was brought in. Needless to say heart surgery was cancelled for that day. When I had my regurge before surgery, I felt sluggish. Always dragging behind my fiance when normally I'd be 5 steps ahead of him. Everything felt more labored and took more effort. My valve was too far gone to repair it so I have a St. Jude mechanical valve. I had my surgery 7 months after the initial attempt. Happy to answer any questions.

Lisa

in reply to Holley

I lisa did

you have any heart related symptoms, like flutters fast heart rate, and was you on beta blockers ? my Gp thinks alot these are anxiety related with me ! i do have alot of anx and some panic attacks yes i feel sluggish, like you did Holley but i put that down to my mpn and aches and pain generaly . Take care Holly

Lure2 profile image
Lure2 in reply to

Hope you have got someone else than your GP to discuss this with. I guess you need a real Specialist who can answer all your important questions. I doubt you have APS.

Good Luck from Kerstin in Stockholm

Thank you Kirsten ,yes see my cardioligist end of month

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