Elated! A strange response!

Hiya everyone. I received a confirmed diagnosis for APS in December and my first reaction? Elation!! Over the last 30 years I have been told I may have lupus, MS etc. About 4 years ago I started having heart problems and was diagnosed with mitral valve stenosis. After having the balloon to stretch my valve was told it should last 5-10 years. Ha it lasted 6 months and so in 2014 had open heart surgery to replace the mitral valve. I was I a coma for a moth afterwards which the consultants could not understand at all and my family were told to prepare themselves that I may never wake up! I was told I must have had Rheumatic fever as a child which I definitely did not!

I started to recuperate okay but as I am my husbands main Carer (he is severely disabled with MS), every time I transferred him or move him I started to have TIA's, have had 5 so far. I was given an appointment with a lovely consultant for the strokes and he did a whole mass of blood tests and told me he thought i had APS , but I couldn't be tested for it as I was already on warfarin for heart (for life). He got me an appointment to see a haematologist and she too was convinced I had APS and sent me to Guys hospital in London. There they could do tests on my blood by extracting the warfarin from the blood and various other tests which has definitely confirmed the diagnosis . OMG I'm not a hypochondriac! There is a reason for so many aches, pains and problems! They have even told me it is the likely that the APS is the reason for my heart problems and the reason I was In A coma for a month!!!!! And now I find a forum where everyone is the same woohoo as I said earlier, elation!!! Thank you thank you. I feel as if I can cope with each problem better (well, most of the time).

8 Replies

  • Hi there and welcome, glad you have a diagnosis, a lot feel like this, often as for years they have been told they have been imagining symptoms in some cases! You will learn loads on here and find others who have had similar incidents. Really pleased to find that you had such a good consultant and that you made your way into St T's! MaryF

  • Hello and Welcome

    I've had a very recent diagnosis and felt the same as you. I've been told for the last year my symptoms were in my head - even after two TIAs! I found an APS specialist and finally have a diagnosis and warfarin. I feel huge relief.

    I'm sorry you have been through so much and hopefully now you can be treated and will feel better X

  • Thank you! You too. Isn't it great to find so many people like us, I don't feel so alone any more. I have always ignored many of my symptoms as I have to keep going for my husbands sake, he is only out of bed for about 2 hours a day and bed bound the rest of the time. I do get help for him now but still have to do everything else and if I'm not well everything goes to pot. I am naughty in that I have had a few TIAs and not said anything just gone for a lie down as it causes so much hassle trying to organise carers etc to come and look after him whilst I'm in hospital! I admit it a couple of days later and go to the stroke clinic and see consultant in one day, much easier. (As long as it doesn't get too bad eh) I've been lucky so far. Although I had an Mri brain scan recently which shows I have actually had a small stroke eeeek oops

  • Very naughty! You need to look after yourself so you stay as well as possible for your husband. Hopefully now with treatment that will happen.

    It is so good to have found other people who have experienced the same and yes I no longer feel completely alone either.

    Take care x

  • It's great to have that "aha" moment when you've exhausted all the avenues of the stuff you haven't got but still feel crappy all the time!

  • It is indeed ironic that you can feel elated when you have a diagnosis of such a severe condition - but knowing that you have not been imagining all those symptoms, that you are sane, is a tremendous relief. I didn't get it until about 15 years ago although I had been diagnosed with Lupus Anticoagulant for more than twenty five years previously. Getting the Hughes diagnosis, and getting onto the HSF website etc enabled me to see that most of the 'issues' I was experiencing were pretty commonplace. And staying on here and raising a 'new' one, usually, and quickly, brings confirmation that other symtoms are also experienced by many. I hope that makes sense, been having quite a few days of brain fog!

  • Elation would also be the best description to my reaction at diagnosis. Sadly, many health professionals assume that if they can not account for a patient's symptoms it must be due to a patient's psychological profile. Sigh.

    Don't take this the wrong way, but --welcome ! To our helpful, sane site.


  • Why do I find myself smiling at these posts....it sounds soooo familiar!

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