Hi everyone, I wonder if any of you can help me. I have been diagnosed with APS for 10 years following a PE. Last year it was noted that I had a 'leaking mitral valve' which has since got worse. Does anyone else have this problem or has anyone had the valve replaced? If so, has this improved things. I am 62 and wonder how many other 'oldies' there are in Hughes syndrome land???
Many thanks
Hi... I have mitral valve prolapse...but nothing that has caused too much of a problem....hope you figure it out soon.]
Hugs..
Beverly
Hello there,
I am another lady of mature years, born in 1947 and now 65 and retired. Did you ever have rheumatic fever when you were younger. Much love MaryH xxx
Hi....I have mitral valve prolapse, which the doctor said is not very serious. Good luck.
I have what my doc theorizes is a mitral valve prolapse which showed up during perimenopause some 10 years ago. I am now firmly in menopause and my once several times daily bouts with the prolapse "feeling" are now reduced to only 1 or 2 a month. (Knock on wood.)
I have mild mitral regurgitation and have to have a transthoracic echocardiogram annually. not to bad at the moment no mention of op yet, are you on Warfarin ?
Karen xx
ps 54
Thank you very much everyone for your replies.
No Mary, I didn't have rheumatic fever when young - do you think that might be a factor in your APS?
Yes Karen, I am on warfarin. My leaking mitral valve was diagnosed last year and decreed to be mild, then, in January when I went for my annual echocardiogram it was categorised as mild-moderate and, like you, no one has mentioned op. Having said that I haven't asked the question yet so will have to see how things develop.
Once again, thank you everyone for your responses
Linda
yes and no I haven't had the valve replaced.
Hi Linda
Mitral valve problems are fairly common in APS with about 30% of people having some heart involvement.
It's something I'm quite interested in myself as I was beginning to think that I was having similar problems, but it turned out to be SVT - supra ventricular tachycardia where the heart is short circuiting causing chest pain, dizziness and fainting.
I was very lucky to see an excellent heart specialist who knew all about aPL - apparently they can tell mitral problems from ECG and listening but, as everyone else says, it shouldn't cause too many problems unless you need the valve replaced. Even then, things should be OK but it's the usual problem of an APS patient undergoing an operation.
Thanks Kate for the answer. I was interested to hear about your SVT as my daughter was diagnosed with this 3 years ago. She had a cardiac ablation procedure which (touch wood) seems to have worked.
I hope that the mitral valve problem doesn't worsen, will keep you all posted.
Linda
That's interesting Linda! It seems that this SVT is everywhere (never heard of it before) ...
The specialist said he wasn't willing to do the ablation procedure as (and I quote) - "with antiphospholipid antibodies and a heart condition, you've got Mrs Complication written all over you!". Am going to try beta blockers for now.
Fingers crossed that your mitral valve doesn't get any worse, as I think most of us on here are either Mr or Mrs Complication!
Before I was duagnosed I saw a neuro through my private health insurance and he diagnosed SLE and said I had a leaking mitral value, he said this is common and not an issue, he discharged me and said I should see a Rheumy. I did this privately but suffered a second hospitalised TIA (which the NHS neuro i saw last year says aren't TIAs) anyway I was then seen under the NHS and had a number of tests to establish the case of TIA, one of theses being a cardiac echo? This showed a small PFO but no leaking mitral value. I have tred to get a copy of the report from the private neuro but to no avail.
Hello, sorry I'm a bit late to this particular party, but thought I'd let you know what happened to me. Last year (Oct 2011) I had my Mitral and Aortic valves replaced at Papworth because they had both catastrophically failed. So, had the op, and six months later was diagnosed with APS. The last time I saw Prof. Kamashta I asked the question as to whether the heart failure was caused by the APS, he said it was. I'm 48 and until the heart failure, was apparently healthy.
Don't know if this will help you, hope so.
Best wishes.
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