The Seronegative Hughes Syndrome/APS book idea is back on

A long while back, many of you will remember that I decided to pull a book together regarding the awful dilemma surrounding patients who get caught in 'limbo' due to perhaps having the symptoms and often actual events who are sidelined due to the seronegative nature of test results. Myself and family suffer greatly due to this, and currently so badly that this is impacting my children's education. This book will belong to all who write it with me, alongside raising money for charity, which charity or purpose will be decided at a later date. So I will go back into old posts to collect together the original people who offered to donate histories and also academic help. I am lucky to be able to attend several hospitals and one in particular is helping me now, but really patients should be listened to in a more constructive manner.

To say I am disillusioned regarding our current situation with my family would be an understatement, however I shall turn that anger into useful energy. I have many press contacts these days and also an interview with the BBC coming up in the future for a documentary. I delayed writing this, as own health and that of my children was so appalling, plus we moved house. I would now like to be back on track with this.

So please contact me if you are interested in joining in a positive writing exercise about this subject. There will be no naming and shaming of individual staff, this has to be a positive awareness raising exercise. To hopefully help in general with this tricky side of the condition and the ongoing problems we face.

MaryF

41 Replies

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  • I have little to offer at this stage but you have my full support.

    I'm aware you have had many issues of your own going on plus the worry of your children. I can only admire you for finding the strength to even contemplate writing a book, i shall look forward to the BBC documentary. Take care xx

  • Fingers crossed, they approached me rather than the other way around, they wished to hear historically how in the past I had received such awful care for myself and family and how I had through my own efforts turned things around for us all. However currently I am literally fuming.

    At a later date if you feel like writing your history in some form that would be great. MaryF

  • It is sad when we have to battle so hard, i'm doing just that right now to get my son tested. The consultant didn't have a clue how to test my son for Hughes, as you can imagine i am fuming too.

    If i can get my fuzzy old head around it i will do you my history, we will be heard. xx

  • This is the obvious starting point beyond a detailed history: hughes-syndrome.org/about-h...

    MaryF

  • My starting point was on here with yourself, Lynne & Dave, thank you all. x

    The email address above i forwarded to relevant consultants just for educational purpose.

  • Great. MaryF

  • I am here for you and will help in anyway i can { you know my limitations with this Comp]. Ha HA

    let me know when ready for me !!

  • Thank you, MaryF

  • Write fast, Mary!

    I'm in despair of ever being treated.

  • Anybody can join in with this, it is about pulling information together. MaryF

  • You know they have a different definition of APS in the US. We are just left hanging. I'm not sure it helps your book.

  • Thanks anyway MaryF

  • I live in the US and have struggled significantly to have the diagnosis, up and down up and down. Finally APLS is the label and Lupus non specific, yet they still are not connecting dots the further I go with the disease. What are the labels you have found? Referring to your comment

  • My diagnosis at the moment is lupus like undifferentiated connective tissue diseases. I'm currently ANA negative, and a positive skin biopsy and previous ANA positive tests were disposed of. I have a lot of neuro symptoms and have been tested for MS multiple times and have had some extreme brain fog and seizures. I have low titers of some of the APS autoantibodies, but no events. Aspirin has helped many symptoms, and heperin helped after the seizure. I also have a weird autoantibody that was tested for in the past, but not often now. It is called antimyelin IGG antibodies. It is my understanding that this is a APS antibody, but that is from what I researched. I'd like to do a heperin trial or even a warfrin trial, but I can't find anyone here that will let me try it.

  • I am sorry to hear that things are so tough for you. MaryF

  • I admire your determination and courage, I am more than happy to write a clip. My worse bit was being ignored by my doctor for 6 weeks, telling me I was too young at 39 to have a stroke and it was constant migraine, then blocked ears. Then following what was like a black out, and attending A&E, they told me to go gack to the doctor. It took me a year to get diagnosed, with again lots of determination that I thought I didnt have.

    I wish you good luck, and can't wait to read your book.

    Hugs x x Sam

  • HI, it will be 'our' book, a collection of patient histories drawn together with a forward from the right people. MaryF

  • Hi Mary - I am so encouraged to read your post.

    My life was derailed because of sero-negative APS, suffering serious clotting episodes at a young age with no diagnosis due to the negative blood results. Since starting anticoagulation it has been a god-send.

    I would certainly be willing to help tell my story for your book; the sooner more doctors understand the existence of sero-negative APS and feel empowered to consider anticoagulation when all APS symptoms are present and serious clotting episodes have already occurred, the better. Let us know when we can begin helping you with this. Thanks for your efforts x

  • Thank you, will do. MaryF

  • Sign me up!

  • Great news. MaryF

  • Mary

    You have my full support too.

    Dave x

  • Good, I am so pleased. MaryF

  • Mary I'm in the USA, but have had a rough road for the past 3 years-- 1 in particular getting the right attention and care -- not sufficient testing and not sufficient attention and a lack of knowledge about APS which led to my stroke 11 months ago. It has been difficult but I've learned to look for help in a university hospital where, at least, they are aware of APS but don't have experts on the subject. They, at least, monitor my INR regularly which previous mds didn't. Self testing is not covered here soooo another issue.

  • I also live in the states, I finally got my own machine, it took me a full year to accomplish and fight for it, I had to get it through OHSU in Oregon. Please let me know if I can give you any information about this. I no longer have to go into a local clinic that does not know of APS it reports directly to the University hospital. I used to go to the clinic once to twice a week for INR

  • Please tell me all you know. I'm in NYC and don't know anything about this. Do you have to pay for the machine and monthly supplies?

  • Hello in NYC, My insurance covers the machine. I pay only 13.71 a month. It is a place called Alere and my specialist from OHSU had to give the prescription, then they sent an RN that is a specialist in this field also to teach us for four hours on what to do. I report my INR's directly to Alere and it goes directly to OHSU specialist.

    Refills cost on average about a hundred dollars every six months

  • Hello Mary,

    I am so proud of you going forth with this. If I can be of any help I am available also. My dad passed away of a blood disease, they are believing it was APS yet not able to confirm it was for his sake. He had clots that simply would not minimize, he was on coumadin and then got up too fast one morning while out hunting and the clot that was there slipped through and shut his heart down, the doctors even referred to his death as heart attach even though his heart was healthy. No attention towards the clot that caused it.

    I also had lived my life until mid forties before they recognized what was happening to my body as APS. I went into the ER with a swollen leg with all the symptoms that I had carried for years only to have them say they needed for me to call my family in as I was full full of clots with DVT and PE. My family immediately came in and waited if I made it through the next few days in hospital. I have sense been back and forth for a year with no one understanding anything until finally the diagnosis from a hemotologist that found the blood disease after a year of pushing me aside. Mostly because I did not have insurance. No one properly tested me for anything. It was non stop pain, more clots, struggles and thankfulness that I did not die in the meantime.

    I miscarried several times and had an atopic that burst and had blood issues way back then in my twenties. Should have been looked into there, I had a few years in my thirties where I would black out, dizzy, pass out, get sick constantly, struggle with breathing etc. No test would be done, just send me home with "its a virus". Another "virus".

    I'm thankful now to have the blood thinners, they are one of my "saving grace". I use Warfarin, 7.5 ml daily, I am an active person and own a non profit and my lifestyle has now slowed down to extremes. From traveling to India to now being home bound due to no real security in care. I believe I am overcoming with the diet changes (all vegetarian, no whites, no gluten) High levels of fluid intake and working on circulation.

    If you need anything, please know that I am open and available. After being diagnosed, I have met a handful of clients that come through my outreach center, I serve over 4000 people a year and a few have had APS, one lady is in her 30's and had a heart attack due to the non treatment, they also have never helped her with her diet and currently have put her on a medicine that I was told this disease can not tolerate. It's astounding to me....

    More needs to be said as I believe now our blood is still such a mystery in many ways and many people are being lost through the tracks and not given the right care which can literally cause a life. I myself was even told that they would take me off Warfarin when my blood test showed lower levels of the identify related to APLS..I went from in the 70's to 6.5 and they told me I would be off the needed medication to not further clot or possibly die even. Today if I did not stand strong I know I would be in a clotting state, my joints seize up daily, brain fog, eye changes (now on my 4th prescription glasses in two years) etc. symptoms are obvious that it is still there. The last time they drew blood I was in a 3.0 INR level and still could not get blood out of me due to the thickness, They were baffled. I am not shooting for a higher INR level to function more effectively. I am doing all that I can diet and fluid and lifestyle wise so its the medicine at this point that will keep me away from another catastrophic level.

    Anyway, long winded so sorry. I'm passionate now about others being educated. If I can help I am here.

    xo

    Becca

  • What are your levels of INR on your own machine? Do you get enough of strips? If you go under 3.0 can yo take Fragmin shots like I can? Have you had over 4.0 and did you notice if your blood was thinner at that higher level?

    Good to hear from you.

    Kerstin

  • Hi Kerstin, so good to hear from you. Last evening my INR's were 3.2. my blood did not come out easy either, it was very dark and did not drip after I wiped it. I feel better higher level. Am seeing that the 4 range is better for me and I find more mobility with the joint pain and headaches are not as common right now when I am in the 4 to 4.3 range. They will not move my blood INR to this yet though, they say I have to stay close to 3. The RN that came with the machine training said she sees many people with this disease with simply too thick of blood that need 4 levels to 4.5 before they find relief

  • Hi Becca! Well what do you know ......... I also think that some of us need a higher INR. I have never had a bleed not even when I was on an INR over 5 but I did not stay there of course. Not even when I brush my teeth I have had a bleed. My doctor is so afraid that I shall have a bleed. We are not so many here in Stockholm with this illness. I am not an Administrator any more but I hope to keep Contact with you Becca. Stay well! Love from Kerstin

  • Thank you so much for the encouragement Kerstin, as you have been an incredible support for myself and I am sure many others. I tell my spouse many times over and over how this sight and you especially have brought in so much support. It truly helps as much of the time others just look at us with a dazed look and send me home. Hearing how others live with the same struggles encourages me to keep going and not to get depressed or give up with medical recipes. I worked all day yesterday with my spouse outside, it was quite an active work out and at the end of the day I rested in our hot tub and then feel good today with the exception of the never ending headache that always seems to lurk often, then I simply hydrate more and go a little slower till it slows down a bit. I am thoroughly embracing one day at a time and coming to terms with what it takes to motion my body with this disease. Higher INR is indeed the ticket no doubt about it. The self testing machine is surely a gigantic relief for myself also. Thank you so much for telling me about it, it took some advocating on my own behalf for several months to obtain it yet your encouragement helped me push through. Knowing others go through this also and have strong recipes for ongoing positive lifestyle is a great applause for tomorrow. Love to you, Kerstin. Becca

  • Thank you Becca for your very kind words!

    We will keep contact on this site when something new happens, won´t we? Keep well

    Love to you Becca!

    Kerstin

  • Thank you for taking the trouble to reply, in such depth. MaryF

  • Mary your a champ. Anything that raises awareness of aps in whatever form can only be good. I live here in western australia. Just last week I had my review with rheumatologist. At my appointment were 3 medical students observing. I asked them if they were taught about APS and it was a resounding yes. However then I was dismayed. They are taught that APS is very RARE & they should consider APS if women have miscarriages. Apart from that, there wasn't much else to it. Sadly miscarriage is often the first sign of APS for many women. I told the students this was not the case for me. Also I didn't even get headaches or migraines! They were very surprised. If this is what medical students are being taught about APS then I get angry & frustrated. I don't believe it is rare, just grossly under diagnosed. Bring on your book! Carmen

  • Please do email them the charity website. Indicate to them as well as the wealth of information on it, also many books available! MaryF

  • I am new to this site. My story is long with very little help from the medical community. I have been on the lupus site for almost a year because I had a positive ANA last feb, it was low ended, but I have been taking a natto k enzyme and digestive enzyme for 8 months, and my ANA went negative. I have recently been getting ice pick headaches, which is how a fellow member described it. I have not been tested for Hughes. I had a test for thyroid, which showed nothing, yet a year ago a endocrinologist said I was slightly hypo, with multiple nodules. This may have changed. Never got biopsy...too much money. My one brother has tested positive for intrinsic circulating anticoag lupus and my other brother has a gene that makes him predisposed to clotting. They r both on warfarin. This and my symptoms led me to the lupus site. Although, I am concerned that I am a clotter. The natto k has kept me safe, i believe. But these headaches and trouble breathing occasionally, plus tightness in my left calf and hamstring bring me worry. At this point, what kind of tests could I start with to test for Hughes. I don't understand why my gp never recommended this test with all my symptoms. I feel like the Drs in NY don't know anything. Oh, and I have scarred kidneys. Nephrologist thinks from UTIs which I use to get a lot of, but anymore becuase I take a cranberry supplement daily. Someone on lupus site said it could be from sticky blood. Oh, and my gp said to me just because I had a positive ANA doesn't mean I have lupus. And he said even though the sono report says kidneys may be scarred, doesn't mean they are. Crazy!!! And very frustrated with medical community . Don't want to ever speak to another dr again.

    Thanks for listening..

  • HI there and welcome, firstly Thyroid wise, the TSH test is useless and not fit for purpose! Symptoms should be taken into account. Thyroid Change is a campaigning charity in USA trying to bring about change, also really your family history should be taken into account, many from the USA are on this forum also and may be a good source of information for you. MaryF

  • Yes we are diagnosed, but it does not stop the NHS still ignoring sero negativity when it suits them! Professor Hughes clinics are excellent, it is also on behalf of the amount of messages we receive from Sero negative patients wanting more help. MaryF

  • Hi Mary I have nor been on here for a while, as like you have not been too good. You may remember I was one of the patients and many more, who was discharged from St Thomas's in 2012. I am sero negative and have many problems trying too raise awareness with medics. I was recently in hospital with a gastric bleed, and had to be firm with the staff and consultants with my APS. I gave them a copy of my letter from Prof Hughes a about my condition. Only then did they listen. If I can help you with any contribution to the book. Hope you and your family are doing okay now.

  • I think this is a very interesting subject.

    bernie, do you think "bleeding" is part of APS? Thank you for sharing.

    We'd probably need a far more conclusive evidence (e.g. studies / research etc) to support SN. I noticed some of the papers posted under SN (on other threads re. SN), patients were strongly positive at least in one of the antibody tests (hence not totally SN). Not every single rheumy at St Thomy (now based at G hosp.) would agree with SN In my experience, one was totally, totally, aggressively and violently lol anti-SN, to say the least. Well, how can we counter that? I know, I know..we are all different and this must be something to do with our individual immune system and GENETIC (I'm just be a devil's advocate in a sense). What percentage of patients who were diagnosed (2013-2015 - in the most recent years) were truly SN in any of these antibody tests / or only WEAKLY POSITIVE? I have a funny feeling, very few. I'm just being realistic...no offense. We do need a little more convincing evidence when some researchers in London are adamantly against SN.

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