Daily Mail article

Hi there

Just a heads up to our article appearing in the Mail today - online and in the newspaper. Thanks to all involved.

dailymail.co.uk/health/arti...

[MaryF Administrator]

What a great article, thanks for popping in on. MaryF

[SheRidesAUnicorn]

I saw this earlier, great article!

[AnnNY in reply to SheRidesAUnicorn]

"But they are far from perfect - 20 per cent of people with Hughes will have a negative result in one or another of them - so researchers are looking into more effective alternatives."

Doesn't this imply that they would be positive on one of the tests? What about people who have the symptoms, but are negative on all three of the tests that are listed on the Hughes website? If I showed this article to my doctors I'm sure they would pick this out for a reason not to try me on a heperin trial. Meanwhile I can't draw a clock from memory or necessarily remember the names of common objects when shown pictures.

Please keep pushing for heperin trials, even for people who are negative and haven't had a stroke yet or a miscarriage. I keep thinking my mother had the same symptoms I have at the same age. Her first event was death at 69. I'm 62.

[daisyd]

Thank you, both me and my husband have shared it on face book, let's hope it saves someone, wish I was aware of it 30+ years ago

Brilliant article

[AnnNY]

In other words, is this a misquote, have I been reading the material on seronegative APS wrong, or has there been a change in what it is?

I have the symptoms of MS that isn't MS, and have responded very well to heperin in the past (in the hospital after a seizure) and to aspirin now (not as well), and am unfortunately in the US.

[Hidden in reply to AnnNY]

I have not read the small prints yet...Having said that it's much the same with lupus. heavily invested on antibody research and someone like prof H is a minority..others may have a well guarded belief that their tests are absolute and patients are only a number and the name of antibodies..only genetic marker tests will eventually prove Prof Hughes were right all along.

[Hidden]

I know I am going off topic but are there patients with Hughes with no previous history of miscarriage? Hope it's okay to ask this. I often feel that this 'criteria' seems to be absolute whenever we read these type of articles and people may think, no miscarriage no Hughes?

[mylafont in reply to Hidden]

I have primary APS. Had two pregnancies, two children born early, but healthy. My youngest is almost 24. I started with symptoms (very likely a TIA event) in July of 2013. Not diagnosed till a little over a year later. I've had various positive antibody test for several years before showing symptoms.

[Hidden in reply to mylafont]

So it is normal not to have had miscarriages with APS. Thank you so much mylafont. xx

[mylafont in reply to Hidden]

I don't know if it's normal not to have had them. I also was not sick back then and don't know it this is something you have already or developer later in life.

[Hidden in reply to mylafont]

mylafont

Thank you for sharing your helpful insights. It is an excellent question as well..I'm sure regular posters would be able to reply to this question very soon. xx

[Lure2 in reply to Hidden]

A Rheumatologist here in Sweden (who knows about APS!) told me in 2002 that there are two types of APS; one in younger age and one in older age.

I had had two pregnancies in the right time so I suppose he meant that I belonged to the older age. I was then 58 years old when I had my first TIA. When I look back before that date I think I may have had some events 10 years earlier of APS but are not sure. That was in that case about pain that could not be explained. I had also had TIAs before 2002 but did not understand that it was TIAs.

Kerstin

[Hidden in reply to Lure2]

" I had also had TIAs before 2002 but did not understand that it was TIAs."

Hi Lure2

I know what you mean..!! I sometimes read people's posts pointing out their symptoms of "TIAs" and they took themselves to A & E straightaway..leading to the prompt diagnosis...I wish I was one of them..I really wish I was one of them (really, repeating myself here..) It's so nice to know I wasn't the only one. Really appreciated your honesty. so you could well be suffering from this condition over 10 years prior to the formal diagnosis? Sadly, after something bad happens and we start to look for the answers..I do sympathise with you..hugs

[Lure2 in reply to Hidden]

Hi Ferntree,

APS is so rare and new and so very few doctors understand this illness.

So many on this site have gone several years before diagnose with symptoms and also many with APS with symptoms but without the antibodies required to have a diagnose.

Have you experienced TIAs and what did you do? Hope you do not mind me asking this. We try to help eachother.

The most important thing is that we get anticoagulated as we have too thick blood. After that we can feel safe.

Kerstin

[Hidden in reply to Lure2]

Hi Lure2

"Have you experienced TIAs and what did you do?"

It's an excellent question and perhaps, it might be useful to have a new thread on this? I developed some cognitive problems, trouble understanding, issues with speech, typing issues, spelling issues, word finding issues, forgetting common phrases, sudden dizziness (as if the world was "flipped" upside down, visual disturbances, numbness (in my face / scalp, hands etc since much earlier in life), weakness in my face etc. I used to become very ill sitting for hours in a long haul flight which I regularly had in the past. As you also said, I probably had this much earlier in life. What did I do? Practically, nothing, for many years. Not even an aspirin.

I had strokes which left me "out of action" for some time..that was a few years ago..I had positive antibodies when they were tested in 2013. That was the first time I was tested for Hughes..so I would never know what my titres could possibly have been when the crisis hit me at the time. It seems that the titres change and these are not static. Also, antibodies diminish after certain treatment (e.g. steroid for example).

Then my antibodies went down and I had borderline results in 2014 after my treatment started. But I kept my old positive lab results and showed these to Rheumy but he wasn't interested. I recently saw an immunologist as I wasn't getting much help in Rheumatology in terms of diagnosis and the optimal treatment. My Neuro was more concerned by this because he understood what Hughes syndrome was. My Neuro kept asking me if this issue was sorted out for a long time. Each time I said, no. My eyes are now quite destroyed, which was thought to be related to hughes by the immunologist. Rheumatologist didn't know.

Two early deaths in my family along with clinical symptoms. I think this is not a "rare disease" - there are lots of poeple who suffer from this condition. But because there are strict "criteria" as to who to diagnose, people are not easily getting diagnosed (e.g. you may need to pass at least two types of labs instead of just one type?).

Hope it helps others who are in a similar situation. Take care and thank you for your kindness

[Lure2 in reply to Hidden]

It definitely helps! Thank you for taking the time to write this long answer how it is to live with APS.

Hope you now have an APS-Specialist who understands and that you also have been well anticoagulated as that is so important for us.

I recognize the symptoms you speak of. I have had them also but after Warfarin I am much better. My INR is 3.2 - 3.8 and I selftest today.

Thank you again!

Kerstin

[panda60]

I had two successful pregnancies in the 1980s and no miscarriages. The mention of migraines struck a cord. Mine started when I was 11 and I was plagued by them until I started on aspirin. Rarely get migraines now; any headaches now are normally from stiff neck. Hughes diagnosed when I was 48, two years after a stroke. Now permanently on warfarin.

[Hidden]

Thank you so much, panda60 xx