Recently Diagnosed with APS and a little confused.

Hello everyone my name is Jarvis and I am 24 years old from New York. I am a little baffled by my diagnosis because I went into the emergency room with severe pain in my left kidney area and after going through multiple cat scans (angio and regular contrast) and an MRI with contrast they discovered that I had experienced a renal infarct because of an arterial clot. I was also tested in the mean time and came back positive for Lupus anticoagulant and am going for a second blood panel at the end of April to confirm the diagnosis. I was placed on Warfarin and was told I would have to be on it for life, which at 24 kind of freaked me out quite a bit. I also do experience chest pain and shortness of breath, but according to xrays it is more related to a prior lung surgery/asthma (so I'm told).

My confusion just comes in with the diagnosis. I only have had a renal infarct where a small part of my left kidney died and they found no other traces of clotting in my legs or anywhere. Could this be a false positive and a mistake? I apologize for the post being all over the place I'm just trying to learn more about this and if in other peoples experience this is a plausible diagnosis. My hematologist that I have been seeing since I got out of the hospital confirmed the renal infarct based off of the images taken and confirmed the positive test for Lupus anticoagulant. I am just scared too, its a lot to take in in one shot, so I'm just trying to learn more. Thank you for your time.

16 Replies

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  • Hi Jarvis and welcome.

    Please have a good look a hughes-syndrome.org as it will give you lots of information about tests, this is the page about the tests: hughes-syndrome.org/about-h...

    Your medics are the best people to discuss the diagnosis with and you should not hesitate to ask them to explain things that you are not sure about.

    Do you have any other symptoms, such as: migraine, memory loss, brain fog, speech difficulties, dizziness?

    Keep us updated.

    Best wishes.

    Dave

  • I mean ever since I was diagnosed I've dealt with a pretty consistent kidney pain almost every day. i have stuttered once in a while recently, which I've never done and I also get headaches quite a bit now but I wouldn't call them migraines. Memory loss i get confused on because I do forget some things now but I've always been slightly forgetful.

  • Jarvis, New York City happens to have one of the best medical centers for someone with

    APS

    hss.edu/condition-list_anti...

    best wishes

  • thank you so much luisa I will have to take a look at the site. At the moment my diagnosis has one positive blood test with an "event" being the renal infarct I was diagnosed with, so I do have some home the second test at the end of april will be negative, but was told thats usually only a 4% chance that its a false positive (according to my hematologist).

  • New York CIty has one of the best medical centers for the treatment of APS

    hss.edu/condition-list_anti...

    best wishes

  • Jarvis I know this is a lot to take in however this does not mean that this dx is the end of the world. Many of us live with this condition quite happily and many with little or no symptoms. The key is getting on the right medications to avoid any future complications and getting a good Doctor who understands APS. To me it sounds like you have managed one of those at least, which in the USA is huge and you will have to do the rest. Learning about APS and working with your medical team will help you to understand the condition and in the end take the anxiety away.

    There is a good book "Sticky Blood" by Kay Thackery which would be a good place to start. Written by a lady who like you suddenly found herself dx with the condition.

    Presenting with a clot is not pleasant whereever it is and believe me I know as Ive been through it, but then finding out you have a life long condition is a shock. You need to have time to come to terms with it... and you will and then life moves on. Be gentle on yourself and take each day as it comes. You will be ok and we are all here to support you if you need us. Hang in there and take each day as it comes. x

  • Hi Jarvis and welcome to this excellent site for us with a diagnose and us waiting and wondering of a diagnose of APS.

    I have all the antibodies of APS and in high titres since 2002. I am 70 years and live in Stockholm.

    I totally agree with what APsnotFab says above!!

    When I read "Sticky Blood Explained" by Kay Thackray I understood that I had APS and I had to start warfarin which the doctors had wished some time. Kay has APS herself and tells how it is to live with this illness and all the different symptoms. It is a positive book and also good for relatives to understand us. T

    When I had started my anticoagulation I was much better and most of my neurological symptoms disappeared.

    There are 3 things important:

    1) Get an APS-specialist 2) Get a diagnose 3) Learn as much as possible about APS.

    We have too thick blood. When we are anticoagulated we feel much much better. Most of us need an INR around 3.5.

    Remember this is not the end of the World. Some people go several years without knowing what is wrong with them and have a lot of difficult and severe symptoms. Now you have the possibility to get an APS-doctor who understands and can help you to thin the blood and avoid more complications. That is good.

    Good Luck! Stay on this site and tell us how it goes for you.

    Kerstin in Stockholm

  • Greatings from West Virginia!

    The diagnosis came as quite a shock to me as well -- though it did resolve a mystery as to why I, at age 45, an active hiker/biker with low blood pressure, normal weight and excellent cholesterol readings should be having a terrifying series of mini strokes. The diagnosis left me happy and devastated at the same time. " ' Killer coumadin' for life? But I'm young! I'm healthy! I eat right! I exercise! This isn't supposed to be happening to me!"

    But it was. I went through those stages of denial they talk about, but I found, on the other end, that my life hasn't really changed all that much. No, I never learned to ski and scratched that off my bucket list. No, I don't do thrilling but stupid down hill mountain bike runs anymore. But I still hike, and bike on back roads and rail trails. And I no longer have those migraines. And warfarin has turned out to be my best medical friend -- no more minii strokes! No more head aches!

    At age 60 I am still subject to the same, semi-expected issues associated with aging (though in my case there is always the question --is this or that symptom "just" aging or is it related to APS?) But I still hike. I still bike. I read. A lot. And I am currently taking classes and volunteering a ton of time with various local outreach groups.

    So give yourself some time. I do hope that your April blood work is clear, but the question of which blood work is definitive and which isn't is very much up in the air. My suburban, unemployed English major housewife take is like so many of those fictional TV Dr. House diagnoses: if the treatment erases symptoms, then there's your diangosis.

    But you are located in a great place for treatment. If the diagnosis holds true then as you progress through life you may not be presented with as many of the "normal aging? or APS related?" quandaries which my local doctors are not quite up to answering.

  • Hi there and welcome, please use this forum as much as you like, it is a shock to receive a diagnosis, but really it is better that this has been picked up quickly. You have already been given some great advice by my co administrators, please do keep up updated with your progress, keep on the learning curve and feel free to ask us anything, lots of members across a wide range of ages are here also to answer questions. MaryF

  • Hi Jarvis, I'm sorry to hear of your troubles and I can relate to your questioning whether a mistake has been made. From what you've said so far, it screams APS. APS can cause clots in any organ, vein or artery - you are probably already aware of that. My only advice to you is to carry on asking questions, because we can never leave our health entirely in the hands of others and through questioning you will learn. And through learning you will become more knowledgable about your diagnosis and your body - and that will eventually give you great comfort and control over your own health and future. A diagnosis is a scary thing and is a lot to take in at first. It is easy to say that a diagnosis is better than no diagnosis, but that doesn't make it easier to take in. In time though, you will probably feel very fortunate to have been diagnosed and hopefully that pain in your kidneys will have improved markedly if not gone altogether. Look after yourself and make sure you surround yourself with people who you care about and who nurture you. That is very important when coming to terms with a life event.

  • Thank you everyone for the support, replies, and information. It's really nice to hear from people who have and are going through this and it really helps me significantly. I spoke with the kidney doctor today as a follow up and he confirmed the renal infarct and the pain is from my kidney reducing where the scaring is and pulling on the lining around the kidney. He said it could be temporary or indefinite, it is just hard to tell right now. I also have a brain scan being ordered because of the headaches and forgetfulness, so I will see what happens with that. In the end though it is what it is and at least I am on treatment for it already, even though the Warfarin makes me nervous. I definitely want to check out the "Sticky Blood" book and I am looking into the Lupus and APS center at HSS in New York City, if the second blood test comes back positive. My kidney doctor told me the same though that my symptoms show APS, so he's confident I have it. Thank you all again for everything and I will make sure I keep you all updated.

    Jarvis

  • So trying to leave comment but I guess I have been reading to much. So like you I am all over the place. Was also diagnosed with lupus anti cougulant with factor 5 leiden which I was told was rare either you get one or the other. Yeah me can't hit the lottery anyway all kidding aside I am taking one day at a time making wonderful memories because after all life is nothing but a memory so we might as well make them good! I go tomorrow for the mri on my brain to see if the clot traveled. So will let you know the report out come. Good or bad I am going to continue to make good memories! That care everyone and keep on keeping on!

  • Would only add that being told I'd be on warfarin for life was also a shock for me- 40 years ago. It works!

  • I also would recommend the Hospital for Special Surgery on the Upper West Side of NYC, because you should have a rheumatologist as well. There is another drug plaquenil that could be helpful to you that is usually prescribed by rheumatologists. Also, you will need to be checked out to make sure you don't have any other problems. If you catch this things early on, it can save a lot of problems in the future.

    Don't spend a lot of time worrying about what might happen in the future. If you look up different autoimmune diseases you might just scare yourself to death, but people are usually only dealing with a few of the possible things that can go wrong. A lot of people have very mild disease. I was about your age when I had my first symptoms of lupus, but it didn't stop my life. I've traveled all over the world, I worked in book publishing and magazine publishing, and I am the ripe old age of 62 now. It does make things more challenging sometimes, but everyone has challenges. (A lot of people have lupus an APS, but some people only have APS.)

  • I really appreciate everyone's support. I do have a question/concern though in the past two weeks I have been in the hospital twice due to severe pain in the left kidney (the first time) and the right kidney (the second time) and now experience left kidney pain quite often. Both times the emergency room doctors found no more issues and no more dead parts of my kidneys after an Angio cat scan and an MRI with contrast. My concern is there any possibility this pain is from the scar tissue in the left kidney. I just don't know what could be causing this and im trying to avoid pain management but is that necessary with APS?

  • Emergency room doctors really don't diagnose more chronic, autoimmune type things. I still suggest going to a rheumy first for guidance. There may be inflammation that would respond to prednisone. I don't know a lot about kidney problems, but that is something a rheumy should be able to tell you more about. A number of the docs at HSS specialize in APS.

    Good luck. I hope you find some good help soon.

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