Hi all, only just found this Forum, excellent stuff when you are feeling a little lost....
I suppose I am a recent conscript to the 'World of Hughes Syndrome' it being just over 2 years from copping a DVT and PE and I am still coming to terms with the consequential side of APS.
Had a rough run or so I thought going onto Warfarin, I thought it was making me feel really rotten and my INR was jumping all over the place and took an age to settle, was a Heparin dartboard for weeks and weeks but eventually it settled down and did the first 6 months sentence.
This was followed by a 1 month break to clear the Warfarin so they could do further tests and it was confirmed that I had again signs of Lupus Inhibitor being present and that I had a predisposition to form blood clots.
Now this was very confusing at this time.. you are wondering why you have gone all clotty and medical people are banding the Lupus word around which all you can read up on is fairly worrying whilst using big long words like Antiphospholipid and telling you that you are going to be on Warfarin for life.
As good as the Chest then Haematology dept were in treating it all they were not very good at actually explaining why or what the full implications could be, guess they do not know mainly.... well not in a simple 'it makes sense' way anyway
When I went back to Docs my usual GP almost 'scoffed' at it all with a 'well I suppose they think they have found something'!... I AM still considering changing GP btw!
So the weeks go by and my INR is playing up and I need to see a Doc to check the dosage with my condescending GP out and me waiting for nearly an hour another steps in and as i walk in he goes 'Oh you have Hughes'.. I HAD NEVER HEARD IT CALLED THIS BEFORE! Months and months had passed.. It was a revelation to go home and read all the excellent stuff on Hughes Syndrome Foundations site.
So I settled in to the long run, a few blood tests, Warfarin for life and my days of Chainsaw Juggling over.
One positive is I don't seem to get migraines like I used to, hell they would knock me over, I even had to pull off the motorway a few times to sleep an attack off as they almost blinded.
But slowly I have started to realise the consequential symptoms that seem to hit in little phases are possibly not the Warfarin, the morning nausea maybe, but it dawns more and more the lethargy, the joint aches and stiffness, when words do not come out properly and the brain fog, you forget the..........
There have been moments when it felt like I had ME and Dementia all rolled up as one as icing on the clotty cake and I had a few dark days worrying about it all.
Well until I realised that it's just part of it and fortunately when I went to see the Haematologist for the 2 yr review and told him how I felt he did some additional tests and it turns out I am Folic Acid Anaemic and he referred me to St Thomas' Hospital APS Clinic which I did last week..
More bloods taken more tests to check to be certain, maybe a change of tack if needed BUT more importantly I feel like I am taking control at last, maybe nowt can be done, maybe things can be tweaked, will have to wait and see.
So here I am still feeling grotty and struggling some days like today then bouncing on others...
but at least I will know that what is will be the best I can expect.