Hughes diagnosed after 40years of symptoms

Hello everyone

My story started around 40 years ago I was finally diagnosed a nearly 2 years ago when I saw a different GP in an emergency appointment She was so thorough that looking back over my hospital admission results ( 3 years previously) she noticed a positive result for cardiolipyn . I was referred to a rheumatologist who has been looking after me very well since then . I had TIA s ,multiple PEs late miscarriage and prem baby then finally a stroke 5 years ago

I find living with Hughes is challenging and at times totally debilitating .ihave to say though one of the most difficult things is explanation to others about how it makes you feel .i have a constant jagged eyesight with everything sort of rushing towards me and often feel that I am falling sideways, also extreme tiredness and difficulty speaking

My husband is amazing and we do have a great life together I just wondered if anyone has any of the same symptoms

37 Replies

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  • Really pleased you have finally got a diagnosis, at least now you will receive the treatment you need. I agree it is not an easy condition to live with, but better the devil you know than the uncertainties (and danger) of not having any recognition for your APS.

    Hopefully you will find support and information on here that will make things a little easier .

    All best wishes

    Julie

  • Yes thank you Julie I already feel supported by so many replies to my post

  • Hi and most welcome to our site and talk about your illness!

    You have had this illness for 40 years so I guess you must now be over 60 perhaps.

    I am 73 but has known about APS for 15 years only.

    The most important thing is to have a Specialist of autoimmun illnesses who is specialized on APS/HS and other autoimmun illnesses like Thyroidea and Sjögrens and also SLE as all those illnesses are autoimmun and often go hand in hand. Such a Specialist is so importanat as he or she will understand that you are attacked on several places of your body.

    Also to get anticoagulation from such a Doctor who knows, that as we have had a DVT and a Stroke, we need a high INR with the Warfarin.

    I am triple-positive (have all the three antibodies) with high titres and need an INR of 4.0 to get rid of the different symptoms that follow this illness as to too thick blood (very thick). I also live in Sweden. I selftest.

    I have alos micro-emboli or micro-clots and they are not seen on a Scan of today and therefor it is also important to have a Doctor who does not tell you that "it is all in your head (mind) " (many of our members have been told that several times from different ignorant Doctors who do not understand our illness at all.

    I often suggest new members to read "Sticky Blood Explained" by Kay Thackray. She has this illness herself and writes about the different symptoms and this book is also good for relatives to read to better understand how it is to live with this illness. The book is not written last month so the latest oral drugs are not in it but we still have the same symptoms as 7 years ago. There are two books but the first one is best to start with, The second is called "More Sticky Blood".

    Best wishes to you from Kerstin in Stockholm

  • Thank you I will look at that book Yes I am 64

    My PE was difficult to diagnose at the time Itshowed up as a cluster of clots quite widespread which I now think was micro clots Due to the Hughes

  • Glad to hear that you finally got a diagnosis and hope that you are now getting the treatment you need. Explaining chronic illness can be hard I think. Its oft said, but true all the same I think, that we wouldnt need to explain so much (and almost feel we have to justify being ill) if it was ssoemthing visable and self-explanatory like missing a limb.

    idk yet if I have APS (but have been diagnosed recently with other autoimmune conditions) but I think I have something similar to the eye sight thing you describe in that everything seems to kind of shimmer and seems to be moving. I also get blurred double vision, flashing lights, visual snow etc. Did they tell you what in particular was causing your eye problems? Ive been refered to a neuro-opthalmologist and hope that thsi might shed some light or at least stop the dark descending so quickly.

  • No I haven't been told anything but I have exactly as you described also as I go to sleep I have what I can only describe as looking through a kaleidoscope

  • Im very sorry to hear that having same problems. I have a kind of black kaleidoscope when I shut my eyes. Its hard to describe but its like a dark swirl which seems to be receding but never does.

    Here's hoping we both get some answers and relief. I'll let you know if thas ok if anything comes out of the consulation which might be relevant to your situation.

  • Hi charlieab,

    Read the answer below to Pappp.

    Kerstin

  • Thanks. And please excuse all the typos. Its all a bit of a blur when I write and then I read it back later and a horrendous typo jumps out at me.

  • Re: your eyes. I hope you are seeing an ophthalmologist on a regular basis - not an optician -who will order sophisticated tests and be able to spot any worrying signs.

    With good wishes,

    Ros

  • Thanks Ros needless to say nobody is taking any notice of these symptoms Should I ask for a referral?

  • Hi Pappp,

    I can tell you that I had exactly those eye-symptoms you talk of you and Charlieab here.

    I am triplepositive with high titres and have been investigated a lot before I started Warfarin.

    I could see "double" like kaleidoscope (that is the word even the Doctors used when I could not explain how I felt).

    I lost my sight in my right eye for some minutes (sometimes half of my right eye was grey) Had also bad Vertigo (had to hold on a tree not to fell to the left).

    I had finally the answer from a Specialist here at Karolinska hospital in Stockholm (the best Doctor they had there). He said it was microemboli and that I should try Warfarin. He was a Specialist of Balance-issues.

    I did and my eye-problems were solved but today I need an INR of 4.0 to stay without neurological symptoms.

    Read Kay Thackrays book "Sticky Blood Explained". She had the same symptoms as I had and she writes about her symptoms in this very good book.

    Good Luck! You two are not alone!

    Kerstin in Stockholm

  • Hi Kerstin

    Thanks for your reply

    Can I ask if you still get the kaleidoscope and vision problems and the vertigo even though you are on anticoagulants ?

    I take clopidogrel I assume My INR is checked when I see my Rheumatologist annually in my routine blood tests

    My first TIA gave me the half vision you explain

    I often feel I am falling to the right the other symptom is difficult to explain but if I say it's like looking down from a tall building although you are only standing on the level looking ahead

    My specialist tells me I only have the cardiolypin raised and I have a mild version of Hughes So I am lucky and I feel for everyone out there

    I do have the stroke symptoms which effect the right side of my body and once again these are mild compared with other stroke survivors

    Love this group I feel so much more positive today

  • If you have not been to an optician for some time it is worth going as they carry out some detailed tests nowadays.

    My field of vision problems were picked up by my optician who quickly dashed off a letter to my GP who sent for an urgent referral to the Eye Clinic.

    It may be a quicker route than waiting for a GP appointment, especially as most GP surgeries do not have specialised eye testing equipment to know what the problem could be.

    I was unaware I had this, just thought bumping into door frames and picking something off a shelf which turned out to be the item next to the one I wanted, was just me being clumsy or not concentrating. I also have periods of double vision, blepharospasm and ptosis, (droopy eyelids) all picked up from that single referral from the optician and treated accordingly.

  • Thanks I will be sure to get checked I am known as a very clumsy person in my family so I feel for you !

  • Hi there and welcome, you tell quite a familiar tale. Are you in the UK and are you under one of our recommended specialists for Hughes Syndrome/APS. It is best to be under one of these as the medication, and in particular the INR setting if on Warfarin is usually understood a little better. Also important to check in with your GP to check your levels of Vitamin D, B12 and Iron, plus a Thyroid panel. MaryF

  • Hi MaryF

    Thank you for your post I know you are very knowledgeable about APS

    I am in the Uk and under the care of a rheumatologist I need to check your list but frankly the idea of asking my GP or the Specialist to carry out specific tests is hard for me

    In the past I have been a clinical nurse specialist in Endocrinology yet I have no confidence to challenge or demand Why is that ??

    Pappp

  • You can do private tests easily, if you want to do them, I will suggest some testing companies. MaryF

  • Check out “ the spoon theory” at this website:

    butyoudontlooksick.com/arti...

    Gina

  • Of course, many of us are not as spoon deprived as this author. But this does give us all a useful frame to exlain to our healthy friends what its like to live with a chronic illness,

  • Hi Gina

    Thanks for your post and link which makes such interesting reading I almost sent it to a very dear friend thinking yes this explains it all Instead I thought that I might read it with her to discuss those very intimate challenges of everyday life Wow I am so impressed with this group I don't feel so unworthy now

  • You may also want to check out a book published a few years ago: “In the Kingdom of the Sick” which presents a more academic, detailed analysis of the differing implications of acute vs chronic illness.

  • Hi again Pappp,

    It was better at first with Baby-Aspirin but later on I had more severe symptoms so finally I started Warfarin after many Doctors had suggested that I should do that.

    First of all I can tell you that the antibodies (3 of them to test for APS) can go up and down a lot so if you only have Kardiolipinantibodies positive today you can have others next time you test. There are people here that are sero-negative (not positive to the 3 antibodies tested) but still have symptoms and also a diagnose and need treatment very badly.

    As soon as I started Warfarin (I had taken 3 tablets but I am very sensitive to Warfarin I understand today) and after some hours I noticed that everything was more clear and perhaps already the next day I could read a book without the doubleseeing. Amazing!

    That is why I am on this site to tell others that we need anticoagulation and a Specialist who knows autoimmun illnesses and that we have very thick blood that has to be properly and stable thinned to avoid more symptoms and deterioration of our body.

    I was told that it was micro-emboli I had. Balance/middle-ear/eye are involved.

    I selftest today and need an INR of 4.0 and we do not bleed from warfarin but clot without it.

    I think you should read that book and start Warfarin with a Doctor who has had patients with APS/HS before! A Specialist!

    Kerstin

  • Hello again Kerstin

    I hear what you say but will the specialist I see listen to me He believes I have a low level APS I haven't told him about my visual disturbances believing that they were a sympton of my Stroke I feel I am just making a fuss

    I will read the book and possibly I will feel more enpowered with that knowledge of this disease

    Thank you Pappp

  • You must tell the special all your symptoms so he can get the full picture.Be brave

  • Hi Papp,

    I agree with Kerstin. Thinning your blood will make a difference.

    Two years ago I was formally diagnosed with Hughes. I’ve had it, I suspect, since I was in my 20’s. For the past 25 years I had experienced an aura of flashing lights and would lose my peripheral vision for a short time. This was diagnosed then as an ocular migraine. My “ ocular migraines “ always grew worse during the last weeks of my pregnancies. (After 5 miscarriages). In my 50’s I started getting vertigo, the whole room would spin. They then diagnosed me with Intercranial Hypertension after I developed Papilodema ( a swelling and hemorrhage of my optic nerve) and treated me with Acetazoamide (probably the worse thing for someone with sticky blood! )

    It wasn’t until I was finally diagnosed 2 years ago and fully anticoagulated with Coumadin, aspirin, and Adempas that I am symptom free. I self monitor my INR at 3 to 4. I haven’t had any more ocular issues and I get my ocular nerves checked every six months. Micro clots in my brain probably led to my Intracranial Hypertension causing these ocular manifestations.

  • Thanks for the link Case studies were interesting and thought provoking

  • Thank you for your post I have looked at the link and interestingly I note the cerebellar stroke which I did indeed suffer is most common in APS I Now understand that I probably suffer from intracranial hypertension I feel like I'm treading through a minefield and all of you are my safety markers I'm so pleased you are feeling better

  • Hi again,

    How many antibodies are you positive to (as to HS/APS)? I now talk of your diagnose as it can also be because you have certain symptoms.

    I am not sure that your Rheumatologist is knowlegable in our illness. Not all Rheumatologists know about APS. You need a Specialist of autoimmun illnesses and who has had patients with your illness before so he knows how this illness behaves and that we have very sticky blood and need anticoagulation for it.

    I have understood you are on no treatment for your APS or?

    You should not feel "unworthy" (as you write above) at all. So many of us has felt that way and the Doctors have told us that "it is just in your head". This is a tricky illness!

    If you have not tried baby-Aspirin I think you should do that as a first step to ev anticoagulation which most of us with this illness need. It is enough with 75-100 mg together with food (as to the stomach). You might feel better. One per day.

    Be brave and try to get the book I told you about.

    Kerstin

  • Hi

    I am positive to cardiolypin antibodies blood tests taken over th last 5 years have always been positive I had a late miscarriage a little girl and a prem baby a little boy and a son who has automine disease Crohns syndrome that is apart from PEs andTIA in my 40s and a CVA in my 50s

    Since the stroke I've been on an anticoagulant called clopidogrel anti hypertensives statin and antidepressants for anxiety

    Have seen a Rheumatologist who has other patients with APS I will see him again next March

    I am going to think about all the new information and put a case together in my head then book an appointment with my GP to discuss my way forward I thank you so much for all your advice

    best wishes Pappp

  • Clopidogrel is a little better than Aspirin but still it is only an antiplatelet-drug and not an anticoagulation-drug.

    I do not know when you took those Kardiolipinantibodies but they go up and down and sometimes they are negative. The other two, Beta2-Glycoprotein1 and Lupus Anticoagulant will join the Kardiolipinantibodies perhaps and also be positive. I test my antibodies twice a year at the hospital when I see my Specialists (Rheumatologist and Hematologist).

    You should absolutely not feel ashamed to ask for the bloodtests. This is a severe illness and bloodtests should be taken all the time.

    Tell him you have been on our site. Many members here show their Doctors copies from this site and what we tell you. As this illness is not so common very few Doctors (even Rheumatologists) do not know about it and many Doctors are also afraid not to understand and that the patient should think that he is incompetent, which they are very often.

    You can also ask your GP to do the tests perhaps.

    Stroke is one of the neurological symptoms from HS/APS and usually needs anticoagulation with Warfarin. Read the book and talk with your Doctor!

    Kerstin

  • Hi, I’m glad you have joined us. U will defiantly find a lot of informati here. I completely understand how u feel, the problems with ur eye site as well as the loss of balance. It is difficult for others the even begin to understand how u feel. One reason is that u look fine, u don’t look sick. The other main issue I have is it can be challanging trying to find the words to explain how u feel. Win my immediate family ask how I am I usually tell them I’m me. For them that’s enough to know I’m not feeling well.

    Good luck. So glad u found a diagnosis!

  • Thank you for your post

    It is hard for us as you say

    I am pleased you have a good family to support you as indeed I do

    I am so pleased to be on this forum it has made me feel much stronger

    Best wishes Pappp

  • Hello Pappp,

    I'm so happy that you finally got diagnosed but it's absolutely appalling that it took 40 years of suffering on your part, test criteria really needs to be changed!!

    I'm still trying to get a diagnosis of Hughs despite having a history of multiple PEs, DVTS and TIAs. One thing that you said really jumped out at me because I keep telling doctors about feeling like this and they look at me like I'm nuts!

    "and often feel that I am falling sideways"

    This can happen to me even when I'm sitting down or even lying down!! I find it happens most when I've got other symptoms like blurred vision and difficulties speaking or finding my words.

    I wonder if this is a regular symptom of APS?

  • Hello

    And thanks so much for sharing I have had this feeling of falling sideways, intermittently, for many years I am so grateful to you for replying to me I sometimes feel it must be me

    I have been feeling like it today for most of the day I have also had "jagged" vision "flicking" eye and have been unable to find or pronounce words

    All of these symptoms are probably because I am tired having had more social activity than I normally have

    I find going to a quiet place with no bright lights or loud noises and just allowing myself to unwind ,using mindfulness as a coping techniquehelpful

    I do have to say though that when I do this sometimes I have a far worse feeling like spinning which is quickly then followed by a normal sense of balance

    Keep being brave and strong and know you are not alone

    Best wishes to you for a speedy diagnosis and treatment

    Pappp

  • Hi Pappp, thank you for your kind words.

    I read some of your other responses in the thread and your description of looking down as if standing on a tall building touched a nerve too. I can suddenly feel as if the ground is moving away from beneath me, like you say it's very hard to explain but when I read your description, I knew exactly what you meant by it!

    I too really struggle being around people, in fact I dont really socialise anymore, I find being in a quiet environment much easier.

    You must take the fantastic advice you've been given by the lovely people here in the sticky blood support group and make sure you are seen by the right specialist doctors.

    I ended up being referred to hospitals in London, as I just wasn't getting the right treatment locally but even though I'm under one of the best thrombosis teams, I'm still struggling to get a definitive diagnosis of APS.

    I don't mean to scare you or to sound over dramatic but I want to pass on some advice that was given to me... "You have had a stroke and strokes can kill, they are life threatening, therefore you have every right to expect the very best care and treatment from your doctors going forward!"

    Dont let any doctor brush you aside, you are still far too symptomatic which, as others have suggested, means you are most likely not properly anticoagulated.

    Claire☺

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