Sticky Blood-Hughes Syndrome Support
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Heart murmur

I recently visited the ENT dept at my local hospital for an ongoing ear problem.

The consultant a marvelous man gave me a thorough examination ! He had now produced a tuning fork something i thought was long gone from our consulting room's.

He discovered i had very little feeling in my right leg, yes i was amazed as you are because i had gone to him with an ear problem so why was he examining my feet ?

He didn't stop at my legs as he was now listening to my heart and went on to ask if i would mind if some one else could examine me, this examination took place.

I was now being told i have a heart murmur and a possible valve defect and he is going to refer me for an echo scan.

I have also had a couple of brain scans one done many years ago where scaring was found and a more resent one was now on the consultant's screen being viewed.

I was now being told not enough blood is getting through to the small blood vessels to my brain in fact he was surprised to hear i do not suffer from fainting episodes.........i was more surprised at what i was being told !

Does any one think these symptoms could be related to Hugh's ? ? ? Jill

P.s The ear problem that i went for is thought to be related to my jaw, not that i am so worried about that condition after hearing the outcome of the consultation. :-(

19 Replies

Well done on securing such a detailed and useful appointment. Did they think you had TMJ? Often crops up with a slow Thyroid! MaryF


TMJ you have lost me with the abbbreviation. I was overactive to start of with and have now been underactive for ' many year's. '

I'm on 125 of Levo and T3. Jill


Here you are regarding The Heart:

Wondered if they mentioned this!



Very interesting Mary, I always thought my ruptured sinus of valsalva was connected to my lupus!!! thank you for this!


No problem, we can all help each other on here! MaryF


I was sent to the maxilo facial dept and was made a brace to wear in my mouth at night ! All the brace did was make me dribble

What a marvelous old school of a consultant we dont see them very often these days.

The funny thing was had been put under one of the junior consultants but stuck my neck out and asked to see the top consultant.......good job l did. Jill


Mary, you have on many occasions been of help to me and all I can do in return is send you a heart felt thank you.

Big hugs from a rather frightened Jilly. xx


Don't be frightened..... and thanks for your lovely compliment. I get a lot out of using this site, also and always happy to help. MaryF


I do agree that Mary is quite outstanding!

Hi Jillmo,

I have heart murmor since several years. 5 - 10 years ago I had very high bloodpressure and i still take my 3 heart-and bloodpressuredrugs but now after Warfarin my bloodpressure is normal .Before Warfarin even with those drugs the bloodpressure was quite too high.

I have Pulmonary Hypertension since some years and I do Ecocardiographies WITH DOPPLER since several years (once a year) as I have leaking heartvalves (Tricuspid and Mitralvalve). This has to do with APS!

They always ask if i am breathless but I am not!

After reading about APS for several years (not too much though) I have learnt that if we can keep our anticoagulation level steady and also relatively high (almost up to 4.0 for Warfarin) our symptoms will "take a pause or relax or give up".

If all those doctors out there could understand this. I selftest and I exercise (take a walk) every day and I feel fine at present. I am 71.

I have all the antibodies and in high titres also but I try to be proper anticoagulated as i believe this is perhaps the best way to feel better (at least not worse). I know Prof Hughes will agree to this also.

I do not remember Jillmo if you are proper anticoagulated. It is important that the Physio knows his job because it can be difficult to have all the different numbers and figures of the heart right with doppler. A Cardiolog Always cheque afterwards if he or she must look again if something is not clear. They get good Pictures from me but I am in the best clinic in Stockholm. It is my APS-Specialist that refer me to the Echo and the answer goes to her and to me also. I have copies of everything since several years back.

I am well looked after. As I say I feel fine!!

Best wishes to you. Good indeed that that doctor understood the murmur and did something about it. Hope you have an APS-Specialist Jillmo.



Thank you Kerstin, you too are a superstar or indeed 'Wonder Woman:

MaryF x


Love your video, you always cheer me up with your humour.

Your all star's in your own right, the administrator's on this site are so highly appreciated by so many.

What would I have done without the valued advice I have been given by you all ? I have been guided in the right direction and for that I am so very grateful.

Bless you all. xxxxxx


Thanks again. MaryFx


Hi Mary,

Thank you! It was so very refreshing this sunday to see and listen to her. I felt just like her!

I wish I could fly like her in August as they take our elevator away for one month. New one with automatic doors. I live on the 7th floor so I hope it will not be as hot as the last week then! I am in hard-training!



Your going to need your leotard and cape on to tackle that one

Kirstin. :-)

I'm sure you will manage it Wonder Woman.

I can vision you now spinning around and zooming up those stairs at high speed, but take care when the new door's are in place we wouldn't want you to get your cape caught in them or you will really be in a spin. x


Ha Ha!



I hope the situation mends itself quickly, all the best to you over in Stockholm. MaryFx


Hi Kerstin it is nice to hear from you, it is even better to hear you are keeping well.

What else can one say about 'all the admins' on here ? They are all so dedicated and must spend hour after hour researching not only to help them selves but other's.

Without them I would still be wondering aimlessly from one consultant to another. When I am in a crisis they offer a listening ear and support yet they suffer or have off spring that suffer themselves. I admire them greatly.

I myself have been to see Prof Hughes, what a lovely man. I am seen in Bath by a Professor McHugh for my Aps and Sjogrens.

The ENT consultant had my blood pressure taken before I left the clinic, two taken whilst seated and one laying down ! The lower reading was high so this is being pointed out to my Gp.

Being relatively new to Aps I know little about the anti coagulation side of things. I am currently on clopidogrel and now waiting to be seen by my consultant in Bath to see if further anti-coagulation is needed.

I had a brain scan some years ago that showed scaring but have now had a recent one so they are comparing the two.

The ENT specialist who I saw is married to a rheumatologist so he was more knowledgeable than most ENT consultants I had seen in the past. He viewed my brain scan results and told me I do not have enough blood going through the small vessels that feed the brain ! I am now aware this condition is due to my sticky blood and I have small blood vessel changes going on.

I'm so pleased to hear your coping and are keeping stable.




I was diagnosed with a heart murmur at age 23 (in 1993) by my new doctor when I moved to Washington DC. In 2001 I was diagnosed with hypertension. I saw a cardiologist who informed me that my mitral valve was leaky. I was supposed to have it followed up on in a year but I forgot all about it. Fast forward 9 years later... I was having a hard time keeping up with my fiance. I didn't have shortness of breath but just felt sluggish, like everything was more labored. I went back to cardiology and the scans showed my leakage had gotten worse. It was decided I needed a mitral valve replacement. It was beyond repair. The heart surgeon said it looked indicative of rheumatic fever. I had strep throat a lot as a kid which is a rheumatic disease. Keep in mind all of this was before I was diagnosed with Anti Phospholipid Syndrome. I was supposed to get a bio valve (cow/pig) as we wanted to try for a pregnancy. I had complications with my first attempt at surgery. My blood was acting strangely (oozing). They cancelled heart surgery and did a hematology work up. It was at that point I got diagnosed with APL. & months later I successfully underwent valve replacement surgery. Given the blood diagnosis, It was decided I would go straight to the mechanical valve (St. Jude one) in hopes of not having to do a re-operation later on. They never could say definitively if it was the APS that caused the valve issue.

I'm impressed with the level and thoroughness of your exam!




I am pleased to hear you were well looked after and your surgery went well this is great new's, you have diminished some of my fear. Would you please go into more detail about the strep in a private message to me I am intrigued ? From what I understand strep is quite nasty.

I suspect a friend of mine has strep but the test came back negative. I personally feel the lab did not leave the growth long enough to show anything. He now complains of a pain on one side of his head and sweating, his tongue is fowl and he complains of a sticky substance at the back of his throat.



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