Could I have Hughes Syndrome and can it be reversed?

My mother after a lifetime of being unwell got diagnosed with MS, Lupus and Hughes Syndrome 6 years ago. I have been unwell since 19 with symptoms they just put down to depression and anxiety which although is correct I certainly don't think its the primary cause. I feel helpless and scared and that's why i'm depressed and anxious. I feel terrible most of the time and have symptoms similar to MS and even thought ive had a stroke. All came back negative apart from my Lupus anticoagulant elevated on 2 separate occasions but not near to each other. Im currently awaiting results on my new test. Could hughes syndrome really cause all this. Is the damage permanent or can it be reversed with blood thinners? Answers and personal experiences would be much appreciated.

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  • Hello and welcome.

    Where are you from?

    Who are you seeing/who is doing the tests?

    Hughes Syndrome/APS cannot be reversed but the symptoms and risks can be considerably reduced with the right medication.

    Once you have tested positive on two occasions, a reasonable time apart, you are considered to have the disease and that diagnosis does not change, even if you test negative at some time later. Indeed, many people test negative but are diagnosed by their symptoms alone. This is called seronegative APS.

    You need to be seen, as soon as possible, by an APS knowledgeable consultant.

    Best wishes.

    Dave

  • Thank you for replying manofmendip

    I am from Essex.

    A neurologist who first diagnosed my mother is seeing me. She went a long time even after initial symptoms before she was diagnosed with her problems. As I said it was a lifetime of feeling unwell for her before she started losing function of her leg and arms. Even then they couldn't find anything. A lumbar puncture is what showed real abnormalities.

    I was referred to him because of my similar unwell symptoms which don't fit in with anxiety and depression but again nothing is being found so it makes me look like a hypochondriac. But he took me seriously and found the elevated lupus anticoagulant result. So far nothing is being done about it besides some migraine medication because my time inbetween appointments is long. But yesterday I received another appointment with him for 6 months and a lumbar puncture test inbetween. Also another blood test was taken which I should find out soon. He mentioned to me yesterday about APS because I said of migraines and just generally feeling awfull and reporting neurological symptoms. Tinnitus is severe these days aswell as bouts of severe sweating and feeling hot. I often feel faint and very dizzy. Going out drinking isn't too pleasant most times because I feel even worse. While doing exercise I feel like im about to pass out a lot and sometimes like my head is going to explode. I have lots of problems with my tonsils too so they are due to be removed but I was thinking the overheating could be that. but I have been on antibiotics last 2 weeks and the tonsils have cleared but the hot fever symptoms haven't. Blurry vision is another symptom I suffer with a lot. My eyes aren't good but its not just that because they fluctuate it is like everything is a mist. Sometimes I can get on with it just about but I know im not well but am frustrated really what to do about it.

  • First of all Neurologists are not the best specialists with this condition unfortunately and LP are most certainly not how you dx the condition. In the Neurologists world it might be how they like to dx but this is an autoimmune condition and he needs to be testing your blood and looking for antibodies!!

    From what you are saying, from your two positive tests, from your mothers history, my suspicions are that you need to go to an APS specialist and forget this Neurologist! You are based in Essex so Dr Rachel Davis is in Colchester. Otherwise you may have to consider going to London.

    I would also seriously think about doing this before you have any surgery on your tonsils because if you do have this condition its very very important that the surgeons are aware of your clotting problems before you have it done so they can take all necessary precautions during the surgery and afterwards.

    I would also advise you to get your mother moved under the care of an APS specialist rather than this Neurologist too. He obviously has no idea about Hughes Syndrome which is a detriment not only to you and your mother but it is a danger to both your health. I am appalled that she had to lose function in her arm and leg before anything was done. Seronegative Hughes Syndrome needs to be dx by a experienced specialist and Im afraid your Neurologist has shown he is not that person.

    Please do look on the HSF website for as much information as you need and let us know if we can be of any help in finding you someone and also do let us know how you are getting on.

  • I agree totally with my collegues above!!

    Best wishes to you from Kerstin in Stockholm

  • I also totally agree with my colleague's reply to you. I was lucky to be diagnosed by a neurologist but since then I have found other neurologists to be in total denial about APS.

    Please get yourself and your mother referred to an APS specialist in your area, or a private consultation with Prof Hughes at the London Lupus Centre, London Bridge Hospital.

    Let us know how you get on.

    Best wishes.

    Dave

  • Specific autoimmune diseases are not directly inherited . But the tendency to have an autoimmune disease certainly is. In my father's family, for example, Father had lupus (possibly APLS instead?) a sister had RA, I have APS and my sister has multiple sensitivities. and this in a family that values education and outdoor exercise.

    And again, as stated earlier, APS can not be reversed. Once the immune system confuses a component of " us" with an enemy which must be attacked, that mistake will persist for life. But with medication, symptoms can be lessened or even erased. Many of us, including me, have had dramatic improvements after diagnosis and treatment.

    But medical understanding of the mechanisms behind autoimmune mistakes continue to advance. Who knows? Maybe sometime there will be a cure for autoimmunity?

    But the key to a living as normal a life as possible is early diagnosis and treatment. One doctor explained that autoimmune patients have immune systems which are easily angered. Once you know this, the patient can identify triggers and avoid them to lesson severity and frequency of flairs. Many of us, for example, have found that following a gluten free diet helps. And it certainly seems with most of us that a higher INR ( which means thinner blood) seems to calm our immune systems down resulting in clearer thinking, less fatigue and more energy. Finding that sweet spot where the right medicine thins the blood in just the right way to reassure the immune system that, No, that clotting factor in the blood is NOT an evil viral invader, is a trial and error process. This process will be faster and more successful if the doctor is knowledgeable and experienced.

    Some of our symptoms are internally perceived but can not be clinically measured. This means that doctors who do not treat many Hughes patients will often dismiss the symptoms as psychosomatic. But when you tell a doctor who sees a lot of Hughes patients, that this or that change in medication makes you feel more or less fatigued, that doctor is probably going to listen to you instead of dismissing you. He has undoubtedly heard this before.

    So again: get thee to a hematologist or rheumatologist who has experience treating APS. ASAP.

  • Thank you all so much for replying.

    I have been seeing a neurologist because a lot of my symptoms seem to be similar to MS which my Mum also has. She has Hughes Syndrome but that was diagnosed afterward. The neurologist is aware of it and sent me for tests with it. But my Mum also didn't have anything show up on MRI scans to confirm MS until the lumbar puncture. I am due to have one. So until I have a firm diagnosis I have just had some slightly elevated DVV ratio results on my blood tests. Some have come back ok but on 2 occasions it hasn't. One result was 1.22 which is only just outside normal range.

    I am waiting for results on a blood test from Tuesday.

    My questions are, If I have APS and it has been going on so long does that mean the symptoms I have currently have likely damaged me? If I have had a stroke or TIA it hasn't been noted, They did suspect I may have had one once when reporting symptoms to my dr. I will ask my neurologist next time I see him if he thinks I have.

    About 10 years ago when I started feeling very bad I had some numbness down my left arm and leg and foot and chronic headaches which scared me a lot. The numbness feeling down the left side hasn't really gone but it comes and goes in severity and isn't noticeable besides it feeling slightly cramp and numb. To my knowledge my strength is ok and on the neurological reflex tests they didn't notice anything. If this is due to APS would it be permanent? If I do have lots of clots in my body would they never go away and my circulation always remain poor? I visualise something similar to heart disease when people speak of these clots but instead of it being cholesterol its blood instead.

    We do know that limited blood flow through the arteries causes symptoms similar to what I experience. So do the clots stay or do they dissolve and if they dissolve has the lack of blood flow caused permanent damage?

    I am 36 at the moment but these problems have been since my late teens and the stroke/MS symptoms since mid twenties so the doctors have always thought im too young for anything like that even though they did investigate MS. Any replies regarding the damage or effects hughes syndrome does would be greatly appreciated.

  • Hi there, I am not a doctor. I have APS and i have been on anticoagulation since 3 years back. Warfarin that is.

    Thank you for your question which was very good related. First of all I would like to refer to what is already said from these administrators who know this illness, APS, very well (they have it themselves) and have much knowledgment after several years with problems like this.

    You know that APS is often misdiagnosed as MS. Often by Neurologists which we here think do not understand this illness as good as Rheumatologists and Haematologists do.. Sticky blood is a blood illness. We have too thick blood. What it the most important thing is to thin the blood to prevent it from clotting and cause a stroke or other damage in your body.

    The first thing is to have a diagnose and then to have an APS-doctor. I can only say that I hope you try to fight for your mother and yourself to get such a doctor as soon as possible.

    It can have caused permanent damage. I cannot answer but you can find some good books available for sale on Hughes Syndrome Foundation Charity website.

    I started with "Sticky Blood Explained" by Kay Thackray. Read it. I had this illness for 10 years also before i was right anticoagulated. I had serveral Neurologists to start with. They thought it was MS at first but then they saw my 3 different sorts of antibodies in high titres.

    Listen to what Manofmendip and APsnotFab has told you!!!

    I wish you the best of luck. We all have had to fight to get an APS-doctor.

    Kerstin in Stockholm

  • I can tell you that before warfarin I could not see clear, had Vertigo, very bad memory, sharp pain in my head for some seconds etc etc. Well anticoagulated (Warfarin for me) these symptoms disappeard. after some time. You have to be well anticoagulated within your therapeutic range.

    Kerstin

  • Sharp pain in the temple(s)?? Feels like a lightening bolt for a second or two? Had 'em for years now and never could identify the cause. Doctors always perform the Shoulder Shrug when I ask.

  • I sent you an answer at your message to me. It came perhaps to the writer and not to you. The question was made 1 months ago. Hope you can read what I wrote to you. Kerstin

  • Hi again, Have you got the book we talked about? I am so happy as I live in Sweden and I can selftest. This illness needs to be well and good anticoagulated as we have so thick blood. I am also happy because I have all my doctors at the same hospital working together for my health. I have also pulmonary/heart problems caused by APS.

    I did have a lot of neurological problems with ear,eye, memory, balance, Vertigo Auras and quick sharp pain for a second or two in the temples or back in the head (like you?!) etc etc. Warfarin in the right INR-level was a miracle for me.It took two months to get rid of all of the problems. Tinnitus and feeling a little bit drunk remains and somoetimes Auras.

    If you do not choose warfarin (they talk of other drugs here also) see to it that it is an APS-doctor that understands this illness. (It is a myserious illness in many ways that hides away) and that you get your blood ENOUGH anticoagulated and that it remains on that target-level.

    The pain you talk about is gone now. I also could see my pulse in my eyes like a verticla line sometimes.

    Take good care and try to find a doctor that knows this illness as so few do! Get anticoagulated and you will feel much better .Read books (you can find them on the Charity web site here somewhere).

    A long one but it is worth it if I can help you further .My memory improved also after warfarin.

    Best wishes from Kerstin

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