Very unique APS situation.

I'm 23 years old and I was diagnosed with APS about 3 years ago. I had the testing done initially because my mother has it and I was looking into birth control so I had to get tested for it first so it wouldn't induce clotting if I did.

This is where it gets interesting,

My mother was diagnosed years ago after having me actually and i have 3 younger half siblings so I've watched her give herself shots and she's had many miscarriages 3 of them being very late in development. Since nobody knows much about APS even now let alone 20 years ago she was told APS only effects pregnancy and when you're pregnant but nothing else. She's told me this when I was younger, obviously being my mother and that's what she was told I believed her without second guessing it with all of her other weird issues going on ( my family just thinks she's a hypochondriac, same with me)

Now this is what I believed this entire time until 2 days ago when someone I ended up finding a website about APS and after realizing what it was saying I was nearly in tears because I've found the answer for both me and my mothers symtoms.

I was in the process of figuring out if I had MS or not seeing a neurologist and everything because I have nearly every MS symtoms plus more. I've have also been diagnosed with narcolepsy a year ago.

Basically, now I'm trying to figure out what I should do. I have never been able to keep a job, I've always ended up leaving due to my unpredictable symtoms and I didn't want to put employers through that because I never know if I will make it to work the next day until that very morning. This is all EXTREMELY frustrating to me, especially when my doctor never told me anything about this and insisted I get tested for MS when all along it's something she already knew I had!

I guess I don't really know what I'm asking I just need some advise because this is taking over my life and ruining relationships. Which is causing a huge amount of stress.

Thank you

12 Replies

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  • Hi,

    Welcome to this friendly site where we all have Hughes Syndrome!

    I wonder where you live and who diagnosed you? Were you diagnosed by antibodies or by symptoms only?

    I understand that you mother also have a diagnose of Hughes Syndrome/APS. I can guess that your mother was not diagnosed from a Doctor who knew Hughes Syndrome as this disease is quite young (1983) and rare. Still so many Doctors do not know that Hughes Syndrome has to do with too thick blood that has to be thinned to avoid clots PEs and other organfailures.

    You should find a Doctor who is specialized in autoimmun illnesses to begin with.

    Read also "Sticky Blood Syndrome" by Kay Thackray who has got APS herself and who writes about the different symptoms. A good book for relatives also to understand how it is to live with this illness.

    I am glad that you found this site and I am sure we will be able to help you in some way.

    Stay with us as I am sure you will have more answers from our nice and knowledable members.

    Best wishes to you and also your mother from Kerstin in Stockholm

  • I can tell you that when you find a Doctor who is willing to help you and knows what Hughes Syndrome is he or she will also give you the right treatment because this illness is treatable.

    MS and APS are often mixed together by a Doctor (often a Neurologist as a speciality) who can not distinguish between the two illnesses.

    Kerstin

  • Thank you so much for your reply, I'll definitely have a look at the "sticky blood syndrome".

    I'm living in Michigan and haven't a clue if they're any specialist around here.

    I was also diagnosed by the antibodies. I have no idea which ones all they said was it was the non-lupus one. I don't know if that makes any sense… but that's what they told me.

  • The antibody test you are talking about is Lupus Anticoagulant but as you say it does not have anything to do with Lupus just a badly named test!! I don't know of any Hughes Syndrome Specialists in your area and it's possible you may have to travel to another state I'm afraid.

    For someone who has not had a clot it will depend on how bad your symptoms are on what medications you will need to become symptom free or to get them under control.

    Be aware that many neurologists don't understand this condition or really get it so general Doctors may try and send you to one, especially with MS symptoms. You should resist and find the correct Dr or you will be wasting your time and money.

  • I wrote the wrong title of the book. I have written it so many times but this time it was wrong. It should be "Sticky Blood Explained" by Kay Thackray

    Kerstin

  • I put a post up for specialist in Michigan for you, check it out and good luck!

  • Hi

    I agree with the good advice that my colleague, Kerstin, has given you.

    Dave

  • Hi I echo what my colleagues have been saying, welcome by the way! There are lots of books written both by patients and also Professor Graham Hughes himself, you can read them and pass them on to people who could benefit from understanding the condition if in your life and needing to be told diplomatically. It is very important that you have a specialist who fully understands the conditions, we have a lot of members from the USA on here so somebody will probably say who they see in your area, if not do put up another post asking that. MaryF

  • Hi and welcome. :) I'm fairly new here too.

    APS and other autoimmune illnesses can be genetic, my daughter was diagnosed with Sjögren’s syndrome about 5 years ago which is another one, fortunately she doesn't have APS as well.

    I'm sorry your family thinks you and your Mother are hypochondriacs. I had the usual "You don't look ill" said to my face and "There's nothing wrong with her, she's just lazy" said behind my back at work in the past. The problem with this illness is, and any illness come to that, you have to suffer from it yourself to know what it's really like and how it feels. Sure, specialists can learn about it, what it does to the body and sometimes why, (not 'why' in the case of APS though,) but will never know what it's like to have unless they have it themselves.

    As far as your family goes, my suggestion would be to take then along to appointments with you, sit in, listen and learn. If they refuse, then that would be (in my opinion anyway) acknowledgement that they do believe you, but just don't want to admit it. It worked for me!

  • I just wanted to say welcome and good luck. If u want answers and the right treatment then u have to be strong and do ur own reading and research.

    I started having symptoms (including daily headaches & joint pains) in 1978. I was diagnosed in 2007 with Sjogrens Syndrome a few years later Lupus and in 3013 with Hughes. In 2015 I had a blood clot on my brain and then was put on Warfarin. I've fought until a month ago to get my inr high enough (3.5-4.5) and am feeling a bit better now.

    The autoimmune conditions are hard to detect and often 'hide' for years. During that time I experienced a myriad of symptoms and many people thought I was a hyptocondriac. A best friend said "if u were really that ill u would be in hospital!" Because I cancelled a commitment, she walked out and never came.back.

    Another very good friend dropped me because I was too ill to go shopping. I lost my job as a microbiologist and rely on family to help me all the time.

    My brother has Rheumatoid Arthritis and father Scleroderma

    So I really understand - if u need to talk - just message me.

  • Wendy, it's sad that we lose friends this way isn't it? I too, have SLE, SS & APS.

    My in-laws are doctors and they even look sideways at me if I decline an invitation. Sometimes it feels soul destroying.

    All the best 🍀🍀🍀🍀

    PM

    🐚

  • Our situation seems almost identical. I have narcolepsy as well and was also told that I should be tested for MS and I actually was. I was told by one specialist that I didn't have it and was told by another two weeks later that I did. I got to a point where going to the doctor and having tests done seemed to be consuming my life. I knew how I felt and it almost makes you crazy to hear a physician say you need a psych evaluation when in fact there really is something to it all and you're not making it up! When I was diagnosed with APS, it took a 10 in blood clot for my GP and PA's to notice that maybe they were wrong in forcing antidepressants down my throat for years but I realized that the best thing was to find a doctor that I could fully communicate my symptoms too and that would take the time to research those symptoms. Hear me when I say this, " Only you know your body!" "Listen to what it's telling you, keep a journal and find a doctor who will sit down and listen to what you are saying! If they don't, find one that will. It's your life, it's important!

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