Seronegative Hughes Syndrome - proposed book!

[MaryF]

Dear all, I mentioned some time back, that I intended to pull together a book of case studies around the subject of Seronegative Hughes Syndrome. I had a lot of interested response. So myself and along with two other members intend to start on this fairly soon. People who are interested by private mail will be able to fill out a questionnaire and of course real names do not have to be used, it will hopefully act as a teaching aid and be a very positive thing to do. I will come back with a more detailed post once we have worked out the finer detail. Mary F

[Jade]

Oh yes, I will be very interested. However having found Professor Hughes I foolishly believed being seronegative was not going to be a problem anymore,but now with the warfarin controversy it seems the fight continues. To think up to last week I thought my next big challenge would only be buying test strips at some point. What a fool.

It took me 30 years to get one headache free day, I really don't want to go back to my old disabled life.

[MaryF Administrator in reply to Jade]

I/we hope to get going soon, I have spoken to four doctors already who have given me great encouragement and say it will be a useful. I will keep people updated as it comes together. Mary F x

[Hidden]

Count me in too!

[MaryF Administrator in reply to Hidden]

Good news, thank you. Mary F x

[InSpain]

I'm not seronegative but would like to offer any support I can to all of you who are. I know how both frightening and frustrating it can be when doctor's don't or won't listen to us. After all we are all experts in our own illness and understand our bodies better than anybody else. xxx

[MaryF Administrator in reply to InSpain]

Thank you, your support will be gratefully received. Mary F x

[GinaD]

Since I have had what the new hematologist calls "boring blood" for the past 9 years (though leading up to my diagnosis my cardiolipin antibodies were strongly positive -- but those blood tests have been "purged" from files) So now my new hematologist questions whether I have Hughes at all. -- so, am I 'seronegative' now?

And could my experience be similar to you "proper" seronegatives? -- that the blood may be positive at some point int he past but turns negative later? (And yes, I know that people can have positive cardiolipins but still NOT have Hughes.)

Complicated? Isn't it?

Feel free to enlighten me -- if you can!

[donnabrain]

and me!

[MaryF Administrator]

I have a typical history, as do my children, and my father and grandfather and possibly great grandfather, also my sisters of clotting. In my case multiple in my legs with first pregnancy, if you read my profile it gives a good account. However I have never managed to pass a test.

However Professor Hughes regular use of the case of the identical twins with APS, both with full symptoms, and one having always tested positiive and the other not so says it all! However until recently I was Seronegative Lupus! Which I have probably had since teenage years causing me misery along with everything else. So.. I am stubbornly negative for the tests but nevertheless have the disease. I hope that with so many of our members feeling let down with lack of support, that the book will help redress that. The patient transscript from our last patient's day at St Thomas' clearly mentions that patients must be treated the same way if Sero Negative. I want people to feel confident in being able to fight for better care if necessary and not have support which is little more than lip service if that! Mary F x

[Leigha]

Hi Mary,

I'm not seronegative either, but know how frustrating APS is and I salute you for doing this. If there is anything I can do, count me in!

Leigha

[MaryF Administrator in reply to Leigha]

Thank you, much appreciated. Mary F x

[Annslack]

I am zero negative and had a tortuous route. to diagnosis .Very interested .

[MaryF Administrator in reply to Annslack]

Good, pleased to hear that, Mary F x

[huds]

Hi Mary

I'm seronegative as is my identical twin sister we would both be willing to share our stories if you want them as part of this.

Good luck, this book is so needed.

Rosemary x

[MaryF Administrator in reply to huds]

Good, this just shows how much this is required both for patients and medical staff, and thanks. Mary F x

[Elisabeth]

Hi very happy to help if I can, not seronegative had PE and positive bloods 12 years ago but have frequently had negative bloods in subsequent blood tests. Fortunate to be under Prof Hughes for which I am very thankful but appreciate how frustrating it is for people who aren't taken seriously!!! Hugs to all Liz x

[MaryF Administrator in reply to Elisabeth]

Thank you, a useful perspective and worth including as several people have said this. Mary F x

[bernieembleton]

Count me in too Mary F. I am seronegative, and my cousin is seropositive. We must continue to promote awareness. Bernadette/ Bernie

[MaryF Administrator in reply to bernieembleton]

Thank you. Mary F x

[MaryF Administrator]

Exactly why the book needs to be written, and thank you. Mary F x

[MaryF Administrator]

Thank you, and of course you did pass a test in the end! You and I of course will write about our own experiences in the book plus worry about our children. Mary F x

[sangje]

Count me in Mary and thanks for all your work.currently just trying to convince otherwise very good heamotoligists that zero neg a.p.s exists and can be significant !

[MaryF Administrator]

Hi there, hope you don't mind took a wrong word out for you, and yes...we all have to push if in this position! Just what you don't need to be doing if unwell in the first place. Mary F x

[Squeezer]

Very interested and happy to help!

[medsoph]

Same as above, I have S-APS, very happy to help out where I can There's also my website, which has a lot of detail regarding the diagnosis process and the drama to get there, though I'm yet to update it about a medical conference I recently spoke at regarding my condition.

thediaryofahypochondriac.bl...

Soph x

[MaryF Administrator in reply to medsoph]

Great stuff. Mary F x

[Lure2 in reply to medsoph]

Hi medsoph,

I read what you had written to the Conference. Fantastic!!! We are many that have felt like hypocondriacs in the eyes of the doctors. Good when we know we are not crazy.

I can tell you the Winter is coming to Stockholm in a couple of days.Take good care Soph!

A big hugh from Kerstin

[medsoph in reply to Lure2]

Hi Kerstin,

Thank you so much yeah it's been an 'interesting' journey and so we'll just have to see where it goes from here.

Wrap up warm,

Soph x

[1fnd in reply to medsoph]

I was quite surprised when I just went to read your blog. I realized I had been there before. I am so happy to hear you finally got a correct diagnosis. I am Bridget from fndhope. Would you mind messaging me your doctors in the UK. I am having a horrible time getting doctors who will look at patients diagnosed with FND and see that many (not all, but many) have Sneddons. I too just spoke at a medical training day in Burmingham UK.

[1fnd]

Would sero-negative APS also be called Sneddon's Syndrome? I seem to be getting conflicting information or maybe I am not and I am confused. If so there is a recent review article on the subject. Also, there is maybe some other research connections. Those of you who are sero-negative have you found any other antibodies that were positive? Particularly Tissue Transglutaminase

I have recently found some interesting research articles that may be a connection.

** Re: The research paper discussed citing the twins.

The other twin is now positive APS. Very sadly though, she struggles with neurologists declaring her symptoms are psychogenic despite all the proof. This is where more awareness needs to be done so patients receive proper medical care and treatment.

[MaryF Administrator in reply to 1fnd]

Hi the best I can suggest is to have a look at the papers here, and also get your hands on the transcripts of our last patient's day at St Thomas' in London last May which can be purchased for a small fee, a big section on seronegativity is transcribed on there. It is available through the charity.

ard.bmj.com/content/62/12/1...

I can't give you personal email addresses I am afraid. All the best to you. Mary F x

[daisyd]

Hi I have APS and Sneddons, I think it is sometimes called cerebral APS

If I can help I am more than willing, both my father and his brother have had DVT's my Mum has had joint pains since her teenage years

[MaryF Administrator in reply to daisyd]

Great stuff! MaryF x

[1fnd]

I am happy to fill out any information you would like.

[MaryF Administrator in reply to 1fnd]

Thank you one of our members has compiled a questionnaire/form which we will send out to interested parties by private message later on, and thank you. MaryF x

[LesJames in reply to MaryF]

I would like to take part in this study Mary.

[MaryF Administrator in reply to LesJames]

Great I have had an amazing response, I have to get a few other things out of the way first, then we can start, thank you. MaryF x