It is clear that as members on here and beyond: This is thanks to Professor Anisur Rahman who has developed a new test and set up the research study. However, he has made it clear that it was our patient group who helped shape this project, and we are now working with UCL to develop more research in the future. So a very good outcome for all.
Naturally I have also added this into our own pinned post section for Seronegative Hughes Syndrome/APS.
This is good news for very many of us and our various families etc.
MaryF
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MaryF
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Thanks Mary - very good news indeed to have scientific evidence at last; this should help people to be diagnosed.
The research into Hughes/APS is really flourishing at the moment - today on PubMed there were 18 new studies all from different groups - unheard of in one day!
Thanks Dave It's great to know that the researchers are all working so hard.
Our charity and patient group will be working closely with UCL and other research groups in the future, so we will definitely want to enlist the help of the patients here on Health Unlocked. The idea is that we can help shape future research projects because the researchers are now listening to the needs and concerns of the patients. All good news!
I was excited to see this post and went quickly to read it. But I was pretty disappointed to read the last paragraph, which seems to contradict what Dr. Hughes has been writing about seronegative APS. Am I reading it wrong? I haven't had a clotting incident or been pregnant, but have significant neuro symptoms that in the past responded to heperin and is currently responding to aspirin and prednisone to some extent. I've been trying to presuade my specalists in NYC to let me try a heperin trial. For me going around with brain fog, not being able to remember words (and I was an editor), and having a memory with big holes in it is not acceptable. It's not OK, to leave me like this when there is a possible treatment.
I recently had the three anti-beta2-glycoprotein test and had titers of all three, but not "positive." I also seem to always have aCL (the first one) titers--negative in the US, low positive in the UK. I hope you can make sense of this post, I have a sinus infection that seems to really making my head feel like it is full of cotton.
Yes I do see your point, I also noticed that. I have had really serious clotting incidents in the past, but my children have not so, but they have had really awful symptoms which improved on two Aspirin a day. I guess it is a grey area, that can be interpreted by any decent doctor, Obviously i would have thought this would have added more clout to a diagnosis if for instance a patient like yourself has such obvious neurological symptoms and other factors. I have not had a miscarriage myself, but this is simply down to the fact that both my sisters did, one had seven, but had clots in their legs and lungs, when it was my turn I was sort of watching out for whatever it was. As soon as I had pains in my lower legs off I went to St Thomas' Hospital. So the clots were picked up quickly and I had the correct treatment for all three pregnancies.
With regard to my children our current paediatrician knew nothing about Hughes Syndrome/APS, however he could see our family pattern very clearly and did research and felt that my children's migraines were likely to be this, as well as Lupus. He see could the pattern with my other close relatives.
Some doctors are going to be very rigid, others are going to take a very long look at the wider picture.
Do feel free to use any of the Seronegative papers, which are on the section under 'Pinned Posts', to pass along to your medical team.
Do you think I could email the charity and point this out. I think if the charity website has this posted, I have no hope of getting treated here in the US, where they seem to be resisting treating anyone without high titers and a history of clots, regardless if they have a history of MS like symptoms, migraines, vision loss, seizure and brain fog.
Hello, anybody is free to contact the charity, I think you may have to write very strong letters to your medical provider pointing out what could happen if you are not heard. However has anybody along the way in your medical care felt you have this disease, you need to work on you most positive contacts for help and approach them with your medical history clearly written out in short bullet points, a lot of people are in your situation, wishing you all the best. MaryF
Thanks for reading my long post again. I know I have sinus infections, because I had surgery and scans that showed I did. In fact, I had a scan right before I got sick in 2012 which showed an infection. (Which I think triggered the whole illness.) However, I did have migraines for years which got better after menopause. Sometimes it is hard for me to figure out if I'm having a migraine or a sinus headache. And it is strange that aspirin seems to help my sinus infections more than other things I have tried (ibuprophen, codiene, and imitrex.) It has as well helped my concentration a bit, and helped the peripheral neuropathy that I was having in my arms, and most oddly, stomach pain.
I recently had a scan of my thyroid, and it came back as "atrophied with cysts." My GP says everything is range, so I'm taking .25 mcg of synthroid.. I keep asking for a higher dose and I have the intention of asking to see an endocrinologist, but forget.
I have antibodies to my thyroid, but again they are in the normal range.
I had a biopsy and antibody tests for celiac disease. They say I don't have it.
I was never pregnant. It just never happened. And I still haven't had a clot.
I was having problems with dizziness before I started taking the prednisone, twice with nausea. I thought it was caused by crystals in my ears, but to my surprise it disappeared with the prednisone.
In the fall, I went to a specialist in memory problems, and she followed my reasoning as to why I thought a heperin trial might be helpful (I think), but she said since I hadn't had clots or a miscarriage it would be too dangerous. I'm going for more extensive testing next week. The first memory doctor wants me to go without aspirin or prednisone for the test, so I'm going to have to go off it in the next week. (Fun!)
I've always been short of expected antibodies, but since I was fortunate to have given trials with plaquinil and prednisone, I am diagnosed more by symptoms, history and they way I responded to drugs. At the moment, I'm lupus-like UCTD. I do have elevated CRP and Sed rate.
From what I've read by Dr. Hughes, he seems to recommend the heperin trial in cases like mine, so I do wish that the charity website contained something relating to this when they posted their new seronegative APS page.
Thanks, Mary. I'll bring it in for my testing. If these doctors are supposed to be the specialist in memory problems in New York City, they should be aware of APS and heperin trials.
I was thinking that myself. If I don't have clots, maybe a lower dose would be all that is necessary.
Hi I know this is an old thread..may I politely say, this paper is based on "SERO POSITIVE patients"..please kindly see the quote from the paper as below:
"All 5 had moderate‐ or high‐titre antiphospholipid antibodies"
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It's great to know that the researchers are all working so hard. 
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