seronegative APS

[melt]

i had a stillborn baby 12 years ago and pre eclampsia at the time i was diagnosed with APS but my hospital didnt know much about this little known syndrome. my next pregnancy i was given baby aspirin and alot of care but i had a prem baby due to pre eclampsia again and was left with high blood pressure which i had to go on medication for....for many years i had the "corned beef" skin and cold hands and feet and memory probs which i still have...in feburary i had a miscarriage at 12 weeks and am now on my fourth pregnancy now taking clexane and aspirin but for some unknown reason my sonsultant took me off my blood pressure tabs, im under the care of St Thomas in london, recently i tested negative for APS and was told i was seronegative APS????....all quite confusing really but my past history is still with my first hospital up in Chester, fingers crossed i have a normal pregnancy and have a clear idea what seronegative actually means.

[MaryF Administrator]

Hi there and welcome, you have had a rough trot to diagnosis, like many of us. I am seronegative, what it means is that you have the disease and as yet it has not shown up in the tests. As Professor Hughes often says, it is the tests failing the patients, rather than the patients failing the tests. I hope we can be a good support for you. Let us know what we can do to help. Mary F x

[melt]

Thank you Maryf I feel a fraud being negative and my obs consultant seems to be unresponsive to it, its still a disease that some medical professionals will cast aside when a negative result occurs...thank you for the support

[MaryF Administrator in reply to melt]

There are some very good medical papers on our Hughes Syndrome Foundation website, including one on seronegativity, Professor Khamashata writes on this, as does Professor Hughes. I still test negative.. and so did my daughter until recently. Sooner or later the stance will change on this, as there are so many of use with at times full blown APS and still failure with the tests. I am glad that you are under St Thomas' as they will have to manage you as if you are passing the tests. Keep us informed. Mary F x

[melt]

I will Mary and thank you I have seen Prof Khamashta he is a lovely man I will keep u all informed and I will have a look at the info and I love this site, having so many like minded people to share worries and information x its now my little community x

[MaryF Administrator in reply to melt]

Good on you, and thanks for the feed back. Mary F x

[Jade]

I am sero negative luckily treated by Prof Hughes. However a haematologist I saw did not accept I had it or with the Profs treatment. I saw a local rheumy years ago who also said I did not have it and that "he knew Professor Hughes when he was nobody" . Finally I had a lovely obstetrician in the 1990' s who took me through my last pregnancy when I told her my diagnosis 8 years later she said it was rubbish as I had 3 children. Not counting the miscarriages.

[melt]

Hi Jade these comments you had from various proffessionals is disgusting there's still a lot to be learned about APS and fluctuating levels and I'm hoping that we get more answers

[MJLS]

Hi Melt,

I am too seronegative and have feelings similar in that some doctors won't accept it as the bloods are not positive and I too feel a fraud as there is no 'evidence' besides my symptoms that say I have it.

There are many people on here who can help, they helped me when I became a new member.

Fingers crossed your pregnancy goes well. I don't have children yet as I'm only 21 but my thoughts are with you. I'm sure everything will be ok.

The one thing I have learnt....Fight for what feels right to you! No-one knows your body or emotions better than you do. If your not happy with one decision, ask to see someone else. Check, check and check again as sometime even doctors in the most specific roles make mistakes!

Good luck

[Suzypawz]

It must be very confusing to know deep down you have APS, be told it is seronegative! but not be completly given any support in the mean time?!!

I found this link & wondered if it may be of any use?

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

It does say it could even be lab mistakes!! which I would have hoped this day & age wouldn't be happeneing....but hey?!!

Good luck with it all, keep us posted xx

[CanaryDiamond10]

You would be appalled if you were aware of how many mistakes are made daily both in labs and wrongly administered by nurses (no one is perfect). Also the actual tests are under constant improvement. At this point medicine uses what they have and continues to research for better tests. Sometimes it is the lab tech who isn't quite all there that day. She is only human, the work is tedious and she has a quota to meet because there is always some one else who needs her job. I held the position of Assistant to the President of one of the top ten teaching hospitals in the US. In the course of that position one of my charges was to alert the president to spikes in these errors and exactly where they were, i.e., nurses, dr's writing not legible, typo, pharmacist, record keeper, machinery, the test itself? Holy Cow. There are so many ways to error on a test it brings back stress memories from that job! I also was charged with being the legal liason for five hospitals which were owned and operated by an organization. I can tell you of many wrongful death law suits that are a matter of every day fact. One cannot expect perfect. One may strive for it. But we are, after all, all of us, only human. Just thought you ought to know. This goes on in THIS day and THIS age and always will. It sucks, but its true. So sorry.

Warm wishes, better thoughts, and sorry to bust your bubble.

Canary

[whynotme in reply to CanaryDiamond10]

Hi Canary, I too worked in a hospital lab as Medical Lab Technologist, Key Operator in Chemistry. I have been diagnosed with atypical MS but I know that I have sero neg APS. I have the history but my ACL's have never been over 22 so they( Drs in Canada) will not give me the diagnosis or treatment,

although a specialist in Poland told me that I have APLS. With your background, I wonder if you could direct me to a sero-negative clinic in the USA that I could turn to. I am only getting more achey painy and less mobile and becoming depressed as I feel I am getting nowhere. I also have sisters who have had clots and MI's at young ages and all the rest that quite frankly I'm so tired of talking about. If you have any info for me I would so appreciate it...thanks, Dar

[CanaryDiamond10]

Hi Whynotme. Am having a bit of cataract trouble with my eyes so sorry about the tyos I'm sure must be there, but I need to know where are you planning treatment? In Canada? I'm in the States and am unfamiliar with Canada or its hospitals, but it's a big place! Where are you in it?

General rule of thumb; I would always go to a teaching hospital. They have the doctors trained in the newest equipment which is changing at lightning speeds. They usually have the most $ for capital equipment which is very important to any patients' care. Can there really be a best place yet with as little as they know about APS in general? Mayo always comes to mind, but I don't know specifically if they have been working on Seronegative APS any more or less than other hospitals in Canada or the States. Cleveland Clinic is equally known for its excellence.

The Hughes Foundation Administrators have a lot of links they could pass along to you which you could print and bring along with you to educate the doctors you have to deal with. That would at least, spread the word, and give them a resource because they probably want the problem solved as much as you do just so they can say, yes, I've seen a seronegative patient and I can offer blaa, blaa, blaa. Every new and learning doctor can't wait to see everything there is to see at least once and be able to say, yes, I've had experience. Any of these ladies are fantastik but my memory names, Mary and APSnotfab and Suzypaws. They should know just what to provide you as they have launched many a new patient on their journey.

Let me work on it for you after the holiday. (American Thanksgiving tomorrow) Have been fussing in the kitchen for 3 days and cleaning the hhouse, as this is where the family comits mutual gluteny, And after the turkey, there is turkey sandwiches, then turkey salad, turkey pot pie and finally turkey soup. Lot's of gobblin and strutting around here for the next week or so. Will do what I can, but remind me if I forget.

Smiles, hugs, Happy Thanksgiving !

Canary