Been to see Prof Khamashta...

[jp83]

Hi All, I saw prof Khamashta today and explained all my history etc and he thinks i have APS. I've had bloods/urine samples taken (my purse is in shock- £830+!!!) and I'm to go back in 2 weeks for the results. I got myself a bit upset..silly girl...I explained that I felt like a hypochondriac and asked if he thought I had good grounds for coming to see him because I really doubted my own suspicions and worried that the Dr's thought I'd gone raving mad....he said no, I'm not a hypochondriac and that I have been ignored. I feel like a weight has been lifted but it's a strange thing because although I doubted myself I had always had the sneaky feeling in my gut that my suspicions were right....obviously without you lot I'd have never went, thank you for encouraging me to take control of my own health....He asked if I'd been treated for my retinal vein occlusion....nope....or when my first child had iugr...nope.

I told him about the 2 false positive syphilis tests and he said they aren't the norm to do nowadays but to be grateful that my ophthalmologist had them done as it used to be a good 'indicator' of anticardiolipin antibodies years ago and thats why prof Hughes made the link between these and APS years back.

I have to say although I really cannot afford train journeys and consultation fees they are worth every hard working penny my lovely husband earns so I can now stop doubting myself and no longer worry about people thinking I'm crazy or a hypochondriac. Now to take each step as it comes. Thank you all for your kind words, encouragement and sensible warm hearted advice xxxx

[MaryF Administrator]

I am glad you have had this consultation, many of us have had to do similar, it is wrong that there is disbelief, my history is also a typical one, I had many clots in my legs with first pregnancy, all the notes are archived at St T's, but a lack of volition to get them out! Hopefully with the large drive from so many people now, these attitudes will have to modernize. Keep us posted of positive change, it is always useful. MaryF

[Suzypawz]

I'm glad you managed to see Prof. KhamashtaI hear he's one of the best.

You're bound to get the help & advice needed now.

Sounds like the story of the rest of us, ignored until the point of either having an episode or us shouting at the docs to do their job correctly.

Let us know what the results are when you go back in two weeks.

Good luck, Sue x

[Manofmendip]

Like Mary, I'm glad you had this consultation and I second what she has said to you.

Best wishes.

Dave x

[Lure2]

Hi again,,

I am so glad for you! Many of us have been through this and I practically was in the doctors room with you when I read what you have written.

Hope to hear the rest.

Good luck till then from Kerstin in Stockholm

[bernieembleton]

Well done. Prof Khamasta is a lovely man, and understands. I see Prof Hughes in two weeks. I have seronegative APS.

[emmaj]

I know exactly how you feel i had been round the system and been left to feel like a hypochondriac-even to family and friends, i was embarrassed and trying to struggle through pain and tiredness,saw aps consultants who were lovely but couldnt give answers,missed strokes on mris,and my eyesight was failing,thanks to opticians on the high st and a fantastic gp and neurologist i found myself sat in front of dr kamashta at the end of a long road ready to give up and not having faith in any tests he wanted to do-he was my last bit of energy and i was going to give up after seeing him if the tests hadnt come back postitve. My tests came back positive,and he and his team looked at my mris again and found evidence of two strokes- i was officially diagnosed with aps-i cried relief tears when i came out,such a beautiful natured man-im glad you saw him,its just such a shame he sees us all at the endof our tether it must be so frustrating for him after years of work - take care xx

[GinaD]

I'm so happy for you. Of course, I'm sorry you have Hughes, but I'm glad you finally got that diagnosis. It's amazing, isn't it, that so many doctors think that so many of us are that capable of self manufacturing so many symptoms? I mean, Really? How can so much doubt be out there?

[Tiggercat]

I understand how you feel. I have spent over a year trying to convince people that Derek suffered a brain injury when he had CAPS in 2012. I began to feel like it was all in MY head that he was not quite right. Finally this week we had it confirmed that he indeed has suffered some type of brain injury.

As much as you don't want to be proven right, it is always such a relief when you are told "YES, you are right, and you do have........"

Congratulations, the hardest part is over, now for the long struggle back to health and as good a well being as you can get. Best of luck with the next part of your journey.

[Carole-J]

Dr. Khamashta is a good Doctor, very kind, shows interest and is also very up to date about the condition. He will be a good contact to have and a big help to you. keep well and positive regards Carole J

[Annslack]

So pleased for you. It was such a relief gore me to finally be taken seriously .

[jp83]

Thank you all for your support and empathy. I'd like to reiterate that I do not have any serious symptoms other than the retinal occlusion, not disabled by this nor do I feel in ill health really so it goes to show how silent this can be. I am lucky that I havnt been as unfortunate as some have with debilitating fatigue, strokes, tia, embolism, brain injury etc etc....very very lucky. And sadly and maybe quite shallow on my part...but I'm so glad I can say I have this now as I have felt like people have thought I am attention seeking/clutching at straws or a hypochondriac and I can now tell myself and others that there's a reason behind my suspicions and feel confident in my own instincts xxxx