No idea where to go next

[Newcastlelad]

I there everyone I was hoping someone could help me. About 4 years ago I pushed my doctor to run the APS blood tests to look for the antibodies as I have believed I had the condition. The tests came back and I had tested positive for Lupus anticoagulant. I was told I needed to wait 3 months to retest again. The second test came back positive again for Lupus anticoagulant. I had already been recommended the only specialist in my area by someone very helpful on this site so I asked if I could be referred to her. The doctor agreed and I waited. About 3 months passed and nothing so I went in to see my GP to see if the referral went okay. I was assured it had and told to be patient. I waited another 9 months with nothing so I asked a different GP I was now under if they could check for me and they said the referral had not gone through properly and they were very sorry but she agreed to fast track my referral. The appointment came about 3 months later but not for the doctor I asked for but I was very unwell by this time and went to the appointment.

I was told I pass the lab criteria for APS but not the clinical as I had never suffered from a DVT or stroke but they would monitor me closely and see me again. About a month passed and I received a letter from the Rheumatologist telling me they had checked for APS antibodies with blood taken on the day and I was now negative so he no longer wanted to see me and I was discharged.

In the mean time I was being investigated for Sjogrens disease and Hashimotos which my mother has as I had all the symptoms but the bloods came back negative. My grandmother who passed away along time ago suffered from clots and strokes but never had any diagnosed reason why.

I researched about the APS antibodies going negative and found many places telling me it doesn't matter if you go negative as long as you have had both tests 3 months apart test positive so I went back to my GP and asked could I be referred to the specialist in APS listed on the foundations website and recommended by someone on this site and she agreed to refer me. I waited 9 months and I received my appointment letter for the musculoskeletal Rheumatology at the hospital where the specialist worked but the place which stated which doctor I would see was blank so I started to worry. I went to the appointment today and it was not the specialist I had asked for or even her team. The doctor told me I shouldn't worry about the positive Lupus anticoagulant tests as I was now negative. I pressed him on the fact I had read about how you should be classed as always positive after the 3 months tests as the antibodies can go negative over the years and come back but he told me this was not the case and this was only the case if I had suffered from a DVT before and he discharged me.

I'm devastated and I have no where else to turn. I'm very concerned I have developed Avascular necrosis of the knees and hip but he never even agreed to send me for an X ray.

Was I wrong about the fact the double positive test should always be taken into account even if later you got negative? or was the doctor correct in telling me I have to be persistently positive? I feel like the specialist I wanted to see is now untouchable to me.

I really appreciate anyone who took the time to read my long post and Thanks in advance for any help.

[HollyHeski Administrator]

I'm devastated for you, I have re read all your previous posts and this really has been a long haul.To not even take x rays is unacceptable - I have always understood that once positive x 12 weeks apart is conclusive to APS but more and more I am hearing that doctor's are saying no.

The criteria for APS is still evolving with a clot being top symptom.

I'm sorry you are not getting medical results but please persevere with getting treatment for your knees - your GP can arrange an xray.

[Newcastlelad in reply to HollyHeski]

Thank you Holly for being so kind. I'm going to try and get a GP appointment tomorrow for a knee X-ray. I'm not the most socially active person due to my health problems over the years and I might appear a bit anxious at appointments and the last few doctors have always sort of put this above anything medical. The doctor today even started to ask me about things with were totally unrelated to my problems like did I finish my schooling, have I got a job which I replied no as it would be impossible with how things are and he started asking me about what do I think I would like to do for work in the future and he thinks I should see someone for my anxiety.

With the problems I have had getting to my local specialist I'm seriously considering trying to get a private appointment with professor Hughes in London which I have read some other people have on here even though its 6 hours away. Although I'm not even sure he would agree to see me.

Thanks again for your message.

[HollyHeski Administrator in reply to Newcastlelad]

Several memories come to me here - On my second stroke, my husband was taken behind my curtain and asked if I had mental health issues? This was over 20 years ago, I couldn't speak because of my stroke but nothing wrong with my mind!

When I had no use of my arms and hands and extreme spells within my head, it took years to get a diagnoses, my anxiety was so extreme I was confusing all but I persevered- my determination got 2nd opinions and conviction with a diagnoses - and yes severe stenosis of subclavian artery. I knew all along 'this was not in my mind'

My answer to anyone with health issues, listen to your body, learn what's good/bad for you and yes struggle along but anxiety- well , my belief if I am not listened to, ignored or treated like a hypercondraic then of course I'm going to have anxiety.

On the other side our anxiety can also lead us to diagnoses ourselves!

Go see you GP and get that xray - hopefully that will lead to getting treatment for that.

Prof Hughes I understand is now retired but I think he still runs clinics with other docters specialising in APS at the London Bridge Clinic - Mary can give more info on this.

[Ozchick]

Gosh! You are incredibly patient to wait so long for appointments (and to wrong Specialist to boot!). I generally go to appts by myself but if my head's a bit fuzzy and have brain fog I cart my husband along to fill in the gaps. I've got a good team now but I remember the long road to diagnosis and having doctors look at me as though I'm from another planet.

As Holly advised get your X-ray and perhaps take along a partner or trusted friend to your appointment and also keep a diary of your symptoms so you don't forget. Also the dates of your bloods and results so you have proof. I don't know if your NHS covers cost of Londonbridge but they are very knowledgeable and very worth the visit if you have to pay.

Good luck with it all and be prepared to argue if you disagree with doctors,

[GinaD]

I too was dismissed as a nut case earlier in life while still on that bumpy road to diagnosis. My suggestion is that you make a list of all the symptoms, events and blood and doctor findings by date. In their minds, doctors can dismiss patient's words, but documents are more likely to attract their diagnostic attention. And yes, it might be time to consult with a doc of your own choice and refer yourself. I was diagnosed in 2001 and have been happy and mostly symptom free ever since while on warfarin. But my original diagnosing hematologists have both retired and, despite having their data, subsequent hematologists want nothing to do with me and complain that yearly appointments with me are a waste of their time. So, my wonderful internist/ GP manages my APS. And I do realize that hematologists are also cancer treating oncologists and are therefore very, very busy with patients struggling to live a bit longer. So I understand, but certainly do not condone their dismissivness!The way us APSers can be dismissed is disgusting! Fight on! ( and get that X-ray) and consider taking omega 3 supplements to thin the blood a bit and help the joints.

[GinaD]

And another note -Dr Hughes has noted a relationship between APS and gluten sensitivity. All my APS blood work went negative in 2004 which is the year I went gluten free! So, are those dismissive hematologists right and I should stop warfarin even though I was triple positive from 2000-2004? So do I want to risk having another stroke by stopping warfarin and agreeing that my APS days are gone? Uh uh! Nope! Nada!

[Ladydale]

I'm surprised you even got a test. I was tested after a pulmanory embolism and tested positive on two occasions three months apart.I was offered the test and put on warfrin for life. I don't have a specialist. I don't understand why you need a specialist. I have a diagnosis of APS and am monitored regularly by my warfrin nurse. I was offered a test due to being of child bearing age as it can cause miscarriage and still birth.My daughter takes aspirin to minimise the risk after loosing her first child at 10 weeks. They don't normally do tests unless you have a clinical history.

[Stereolover]

You have been treated terribly. I was diagnosed in 2007 by Prof D’Cruz. I have never had a DVT but I still got diagnosed. All I can say is don’t give up, keep fighting! If Prof Hughes has retired maybe think of seeing Prof. D’Cruz privately if you can afford to.Wishing you the best of luck.