What questions do I ask?

Hi Everyone. Im looking for some advice. I have an appt with an APS specialist next week following tests by a Neurologist suggesting I have APS. What should I ask him? Im very fortunate that I don't have many symptoms yet, fatigue being the main one followed by a number of other irritating concerns and to be honest, I haven't felt like my old self for about 3 years now. Im taking baby asprin daily since I saw the neurologist and I must admit it has helped with some of the nerve problems I have but is there anything specific I need to know about regarding my blood or anything I should know about for the future.

To my family I've been a hypercondriac for so long, its reassuring to know I finally have a diagnosis and its not all in my mind.

Hope you can help.

Thanks

8 Replies

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  • Hi Missdaisy! You have hit the jackpot finding this site. If you go to the top of the page you will see a column for "QUESTIONS". Click on that and you will find many of the same questions you are wondering about and many fellow patients' advice and links to more knowledge. You can also go the to Archives to find the answers to many questions and some interesting reading. I am sure your other doctors have explained the basic disease to you (if not - just google it.) It affects each patient differently. Some are managed on aspirin, such as myself. Others have major organ involvment and are managed by blood thinners combined with other medications depending on their diagnoses. Most people have more diseases than just APS and usually, but not always, autoimmune diseases. It involves all ages, but I believe it is being diagnosed more now because of Professor Hughes and his team's work in organizing the like syptoms and analyzing them in an effort to have like criteria to diagnose a patient. To simplify it.. so all doctors are on the same page. When they see a grouping of like symptoms they can reasonably test for the indicated disease. Those tests will verify positive or negative. But tests aren't always right. That's a whole other issue.

    After you learn about the physical disease and how it affects YOU, you need to find ways of mentally working with it. I could write all sorts of scenarios here, but they would be useless if YOU did not have those symptoms. First you need to find out how this disease affects YOU. It will do no good to guess what symptoms your disease will bring you. Perhaps no more than now, perhaps it has more in store for you. The best thing to do is learn to LISTEN TO YOUR BODY. Now, there are people whom have had this disease many years and have mastered the art of listening to their bodies and when to ask for help. Then there are newbies (like yourself and not too long ago myself) that need to practice that art. I was diagnosed with APS approximately 2010. I am managed on 1 -325 mg aspirin/day for Aps. I have many other diagnoses.

    I read this site a long time before I decided it was something I wanted to join and support. It was the people supporting each other that made me want to join. I had many specific questions; all the answers were somewhere in this site's history or I would find it in other patient's stories. I realized I was certainly not alone. I realized I would have to spread the word to my doctors because most of them were in the dark concerning this disease. The administrators on this site can prepare you with documents which will give ignorant doctors the information and help to prepare you for your appointment with the APS specialist.

    The first thing I did was begin a daily journal. I rated my pain and mental attitude on a scale of 1-10. I took note of any unusual pains, swellings, headaches or oddities that were physical. I noted duration and what may have triggered it. I noted diet. I noted any questions I had for my next doctors appointments. I noted anything I thought pertinent that day., Some days I just ranted and raved about the injustice of MY having this disease so long and no one diagnosing it, when I knew I had it all my life. Some days it took less than 5 minutes. It is the greatest memory aid you can do for yourself. When the doctors asks, "When did that new rash come?" You'll know exactly when. How long have you had headaches that bad? You'll know exactly how long and how bad. I keep a list of informative links in the back of my journal so if there is a term I don't understand I can look it up quick and handy or if I want to compare one university's studies against another's I can manage it.

    I don't know how old you are but you'll need to advocate for yourself at some point. There are many helpers and natural caretakers on this site. They take care of each other. Just ask.

    Good luck, MissDaisy,

    Warm wishes and welcome.

    CanaryDiamond10

  • PS: Be sure to ask the administrators on this site to get you the appropriate documents to help to introduce you to your APS specialist and let them know you want to understand. They are great written information providers.

  • Hi there, medical history in bullet points is good, so you remember everything at appointments, and there are a wealth of medical papers on The Hughes Syndrome Foundation website, linked on this site...lots of very good information on there. Also be very careful to not leave anything out from your medical history as it all adds up, and also what is going on now, ie memory, migraines etc etc anything of interest.. I do this, both for myself and children, as it is so easy to forget it all on the day, and appointment times are very limited. Best of luck. Mary F x

  • Hi miss daisy

    Good to hear you have an appointment with APS specialist.

    I always go armed with any previous test results, a daily diary of symptoms, maybe a week in the life of.... A list of illnesses throughout life, reactions to meds, stings etc, ( you're be amazed what's relevant)! I also write a note of how APS affects my life on a day to day basis!

    Have a look at the Hughes Foundation website at hughes-syndrome.org for info you could print out to take with you.

    The fatigue, some patients including myself have found Plaquenil helps, doesn't get rid of it, but it helps!

    Good look hon!

    Take care gentle hugs love Sheena xxxxx :-) :-) :-)

  • are you in the UK?...US?

  • Dear Missdaisy

    Welcome to our site and I'm very glad that you have found us.

    As others have already said bullet points of your complete medical history, leaving nothing out, especially things like migraines and abdominal pains in your childhood, teens and twenties. Also any unexplained illnesses; I had two bouts of hepatitis for which no viral cause could be found but which Prof Hughes said were likely to have been due to APS.

    Very best wishes.

    Dave

  • Good luck. And one suggestion? If your APS is confirmed, ask about travel restrictions. It is not a good idea for any of us to sit all folded up in a budget airline seat. Most airlines will let you have a buikhead seat (wherein you can prop your feet against the wall -- I know! ungainly, so wear pants on the plane -- IF you have that golden letter from your doc. So, if you have APS, ask how soon before travel you might ask the doc's staff to write you such a letter?

  • Thank you all so much for your help. I never realised symptoms in my teens, and later could be related to whats happening now but I will mention them.

    I will let you know how I get on.

    Many thanks

    PS - yep, in the UK, my GP has been very patient with me but sadly its myself that has pushed continuously for tests as I knew it wasn't in my head. When my GP found out I had this he didn't even know what it was - I had to tell him about it.

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