Confusing APS diagnosis

[NicBay]

Hi - I have recently been given a diagnosis of APS after two positive blood tests for the Lupus Anticoagulent - one as part of pre-surgery assessment and the next 4 months later. I have was referred to the haematology dept at my local hospital. I had a 10 min consultation with a registrar who asked a series of questions had I had clots, miscarriages, heart problems, did I drink or smoke when I answered no to all I was told that I didn't require any treatment and discharged.

Around 4 years ago I had a 7 month period when I was experienced extreme fatigue, dizziness, brain fog - I was tested for various things including thyroid, diabetes all negative - I never did find out the course of the symptoms but gradually things improved, although from time to time I have experienced what feels like mini attacks of the symptoms for shorter periods. For several years I have also experienced joint pain especially in my hands and feet - my father has RA so have had several tests for that but all come back negative, I have slightly high inflamation markers, but GP has said that is probably due to a replacement hip I had earlier this year. For the last 6 months I have also had tingling in my hands and sometimes feet. At my consultation I explained all these symptoms and said I wondered whether they were Lupus related - the Dr said she didn't know much about that - when pushed she said I could go to see a rheumatologist if I wanted and she would include that in my letter back to my GP but I would need to go back to my GP myself for a referral. I have an appointment next with my GP and am going to ask to get referred to a rheumatologist - hopefully I will get some answers.

Just as I was about to leave a nurse who was in the room handed the Dr a leaflet about Hughes Syndrome to give to me - when I got home and read the symptoms I was or had experienced 6 out 7 of the low grade symptoms listed.

As I have been discharged with no treatment I am unsure whether this is something I need to advise when booking travel insurance, life assurance etc - obviously I don't want to have to unless needed as I know it could increase premiums significantly. With regards to the haematology side of things is this something that could change, get worse - as I have been discharged without treatment I am a little worried that the condition isn't going to get monitored. While I don't want to have any labels I just would like to be taken seriously and not made to feel like I am a hypochondriac.

Sorry for the rambling post, but it would be great to hear from anyone else who has had similar experiences.

[MaryF Administrator]

Hi and welcome you do tell quite a familiar story. Hold off on travel insurance changes currently, however, you have been offered a referral to a Rheumatologist? Please read through our charity information carefully. hughes-syndrome.org/ the information is clear and up to date, as is our list of slowly increasing specialists! Make sure your GP refers you to one of these, presuming you are in the UK, if not come back to me and I will still try to help you. hughes-syndrome.org/self-he...

Make sure you write out you history in bullet points, and also current symptoms and also alert them to previous tests passed. It is important that you remain on top of any symptoms and that the right medical care is keeping an eye on you. Please keep us posted and feel free to ask any questions. MaryF

[NicBay in reply to MaryF]

Thanks Mary - yes currently in Kent UK so will asked to get referred to one of the rheumatologist on the list. We are hoping to move to Portugal at the end of next year so I would get everything clarified before than as we will have to pay for private healthcare there and obvious the outcome could considerable impact on that.

[MaryF Administrator in reply to MaryF]

Yes good to get things tied up before you go, although here you are in Portugal papers being written by medical staff: repositorio.chporto.pt/bits...

and more from Dr Fatima Serrano - Lisbon - Portugal. researchgate.net/profile/Fa...

MaryF

[Lure2]

Hi and welcome to this friendly site where we all have APS and most of us have travelled a long road before we have been diagnosed, seen by an APS-Specialist (we do need such a Doctor!) and properly anticoagulated for our sticky and very thick blood. After that we feel much better.

I live in Stockholm and have been on this site for several years and I have also Lupus Anticoagulant together with two other antibodies for APS.

You will no doubt have answers from others. I think you should read "Sticky Blood Explained" by Kay Thackray. She has APS also and she writes about the different symptoms of this illness and also how it is to live with this illness. A good book also for realatives and friends to better understand us. I have it in pocket and I read it and understood that i had to start Warfarin. We had exactly the same neurolgical Eye-symptoms.

Stay on here and ask any question you like. We learn from eachother.

Best wishes from Kerstin in Stockholm

[NicBay in reply to Lure2]

Thank you Kerstin - have just ordered "Sticky Blood"

[viv112]

Hi..I was diagnosed 7 years ago from blood tests and am one of the lucky ones who hasn't had a clot, stroke or miscarriage. Do you have 'livedo reticularis', blotchy skin on your legs..which is another key symptom? Although my GP initially referred me to see Haematology, they referred me to Rheumatology without a consultation. The consultant Rheumatologist recommended that I take a baby aspirin 75mg every day and I soon noticed an improvement in my fatigue and my skin. I have an appointment every 6 months. I also have neurological symptoms, the tingling and numbness in my hands and feet and that started about 10 years ago. I was referred to see the hospital Neurology Dept and had nerve conduction tests which confirmed that I had an axonal peripheral neuropathy. This is considered by them to be unconnected to Hughes Syndrome? Maybe you could ask for a referral to Neurology.

Although you may need to state that you have Hughes Syndrome when applying for Health Insurance or travel insurance because it is in your medical notes you can also truthfully state that you haven't had a clot or stroke or heart-attack, and these are the things that increase the cost.

Also, take care when you fly, particularly if it is a long flight.

[NicBay]

Thanks Viv - no blotchy skin - it's mainly the aching joints and tingling hands that are most annoying symptoms at the current time. Just been tested for Carpal Tunnel but negative. Hopefully the Rheumatologist will be more help than the Haemotologist was.

[Lure2]

Hi again, I had also Carpaltunnel syndrome and they wanted to operate but I did not like them to do that as i did not have so much pain. After I had been anticoagulated with Warfarin and no more thick blood the pain was gone. Like so many other symtoms. I am primary APS (no other autoimmun illnesses so far as we know of).

I also had microembolies so every clot may not be noticed when they happen but all the same you can go on clotting.

Why not try baby-Aspirin if you can tolerate it. I was better at first with this antiplateletdrug. Aspirin in no anticoagulation drug. Take it together with food.

We have noticed here that the Neurologists do not "get" what APS is about - too thick blood that has to be thinned!

I have a Hematologist and a Rheumatologist (APS-Specialists both).

Kerstin in Stockholm

[NicBay in reply to Lure2]

Fortunately all the carpal tests were clear, but want to get to bottom of tingling etc. If I don't get anywhere once I have seen a rheumatologist I think I will try a small dose of aspirin to see if that helps.

[richardtvaughan]

Hi,

I find it a little strange that the haematologist confirmed the diagnosis of APS and yet stated that no further treatment was required. I think this is unfortunately common for those that have not had an acute condition like DVT, stroke or PEs to let these doctors hang the APS diagnosis on. Their modus operandi is to wait until something happens and THEN treat the problem. In my case that was bilateral blood clots that nearly killed me. Personally I would have preferred a more preventative approach!

It sounds like you have the referral to the rheumatologist in hand, but would urge you to keep on their case until you get the treatment you feel you require.

I would also add that you do not appear to be a hypochondriac at all. The symptoms for our syndrome are many and varied, but those you describe would be very familiar to anybody with APS. As someone who also dislikes the label "APS sufferer" and generally hates making a fuss, I wish I has paid more attention to my "aches a pains" and perhaps had I been I little less stoic about things earlier. I may have been able to have avoided what was a very worrying time.

All the best.

[NicBay in reply to richardtvaughan]

Thanks Richard, yes that's precisely what I find strange - even if I don't need any medication for the haematological side of things I would have thought it is something that should be monitored if only annually. I am kicking myself for not asking more questions before I left the appointment - but the doctor I saw gave the impression that it wasn't anything to worry about and I should just take care when flying and let medics know that I have APS if I have a stroke etc - but after reading up a little more I will definitely keep pushing until I get some answers.