Help please

[lorac1]

A while ago I had two positive beta2glycoprotein results 13 weeks apart. Even though I had symptoms of Hughes as well I was told that I did not have Hughes and nothing has been done since. Out of the blue I had a letter for an echocardiogram, which I knew nothing about and still have not been told anything. I need some advice and hope you can help.

The past couple of months I have had a few episodes of upper chest pain radiating down my arms. Last Sunday it was quite bad and even when the pain went my heart seemed to be doing somersaults. I got a taxi to A&E and was admitted to the MAU where I was on a heart monitor until Monday. I was diagnosed with atrial fibrillation and put on warfarin.

Could this be linked with Hughes? My INR in hospital was 1.2 and I have been told my INR should be 2-3 now and have yet to have this checked. I a m taking 3mg warfarin daily. I have no follow up and saw no cardiologist.

I would be grateful for any help and advice.

[MaryF Administrator]

Hi there, where are you located? You clearly need to see a specialist with working knowledge of this condition, we have a list on our charity website. It is very strange to test you, and then be told with those results that you do not have the disease. Quite a number of people do have AF alongside Hughes Syndrome.

hughes-syndrome.org/self-he...

MaryF

[lorac1 in reply to MaryF]

Hi Mary. I live in Cardiff and have all sorts of problems with the rheumatologist there. This isn't the first time that something has happened and he will pooh pooh it the same as he ha everything else. I am due to see him in about three weeks and if things do not go well again I will see my GP about changing to someone else. I will check for a consultant on your website, thank you very much.

[MaryF Administrator in reply to lorac1]

If you are feeling a bit beaten back by it all, take your most trusted and articulate friend, colleague, relative or neighbour along to the GP to push to see one of our specialists, this is very important!

Do not take no for an answer. Unfortunately there are some medical individuals around who should know better, but persist in not acknowledging the condition, which is disastrous in terms of decent patient care.

Let us know how you get on. You could also before appointment or after it, email the secretary of your GP, marked for the GPs attention the whole charity website, with a short email, plus the link to specialists highlighted. hughes-syndrome.org/

MaryF

[lorac1 in reply to MaryF]

Thank you Mary. I am so depressed with it all, I feel I am beating my head against the wall. I have a GP appointment with a lovely Doctor after my rheumatology appointment, I am sure she will help me. If I see the GP who helps in clinic at the hospital I am afraid that I will walk out. He asked another consultant to see me for my neck problem and didn't say why in the letter! This is what I have to face...

[Lure2]

Hi Lorac,

I totally agree with Mary!

You do need an APS-Specialist who knows what to look for when it has to do with symptoms.

We all get better when we get a Doctor that really KNOWs APS! See to it that your bloodpressure also is not too high. It is very important that the INR is kept stable and not too low.

Best wishes from Kerstin in Stockholm

[lorac1 in reply to Lure2]

Hi Kerstin. My blood pressure when I came out of hospital was 99/66 which is low. I am frightened that this is going to happen again as I live on my own. Since I moved here I seem to have a rheumatologist who is going all out to prove my previous diagnosis of SLE, ignores anything recent that occurs and does not keep either myself or my GP informed.I will see what happens at my next appointment. Thank you for your help

[Lure2 in reply to lorac1]

Hi again,

We understand here how you feel and we will try to help as much as we can. I once again say how very important it is with the Doctors knowledge about this rare illness.

It has also often to do with prestige. The Doctor do not want to admit he was wrong! A Rheumatologist and a hematologist and a Cardiologist are the doctors I see.

You will be ok I am sure! We are much better when we are properly anticoagulated. Please let us hear how you get along now!

Kerstin

[Manofmendip]

Hi Lorac and welcome.

Mary & Kerstin have both given you good advice, which I agree with.

Let us know how you get on.

Best wishes.

Dave