Help everyone, I don't know if I have this, so doing a little research, would anyone be willing to tell me the symptoms of APS please, I understand it can cause blood clots, but would it cause other symptoms, like joint pains, fatigue, legs feeling strange like I don't like pressure out on them, also I think I read about nails showing little brown splinter looking things, I have had them in the past, I have one of them at the.moment, thought it was from lifting things and somehow damaged them. I am 40 years old, female and had a baby last year and my pregnancy was horrid, was pretty much house bound, had a subchloronic hemotoma, that had me bleeding pretty much from beginning until 20 odd weeks, and had a preterm baby at 34 weeks, did not bleed much during labour, also had retained placenta and heomoraged at 4 weeks post partum, losing a lot of blood down to transfusion levels, not sure any of this is relevant, also had a missed miscarriage a year before. Thank you for any info it is appreciated. X
Symptoms please: Help everyone, I don't... - Hughes Syndrome A...
Symptoms please
Some of those symptoms you describe are common with Hughes syndrome and sometimes causes pregnancy complications..you need a specialist diagnosis and that can be difficult..our illness is very complex and difficult....we are friendly here ask away...we are not doctor but can help and relate to you.. effects every individual different..feel free read my story ask questions xx
Hi and welcome, things are a bit tricky out there currently, but perhaps you could write to your GP listing your symptoms, and enclosing this link to our charity: ghicworld.org/ Your GP will need to do the three blood tests needed, and these are done twice usually a few weeks apart, and then a referral to a specific consultant, many are listed on the charity website.
Splinter haemorrhages are not that unusual with us lot. Also a history of miscarriages is all too common, unfortunately. There is a lot of useful information on the charity website, and also by being on here you learn a lot from the questions and answers, also the GHIC Facebook page and Twitter alongside the website, regularly hosts question and answer sessions with Prof Hughes and other leading experts. MaryF
Hi, I don't have a complete list of officially recognised symptoms, but I do have a survey of shared symptoms which was carried out before January 2012. It is still being compiled for my own benefit but the 2011 results can be seen here: bulfin.net/apls.tk/html/res...
I hope this helps to see many of the symptoms that others share.
Hi Ebulfin,
Fantastic list you have got there.
I wonder as you can not see the name APS stated above etc. You can not see if it is symptoms for APS only or for SLE or both.
I had names and email addresses for each recorded patient and all were from Diagnosed APS patients, I followed up each survey form to check the email and names were genuine APS patients before including the questionnaire in the results. At the time of the survey APS and Lupus did have so many shared symptoms that I cannot prove that any who were diagnosed with APS were not suffering from Lupus as a primary or secondary disorder nor could I guarantee the diagnoses if those who completed the forms did not just have symptoms of ME, Fibromyalgia or MS and just happened to have positive tests due to their bodies fighting any number of disorders, as the more stringent tests today might have steered the doctors to a different diagnosis after the date the survey was complete. I hope that makes it a little clearer that this can be used as a guide to possible symptoms but the numbers will have changed since completion. I am still receiving a few completed questionnaires and keeping them recorded for my own benefit. I might publish the renewed numbers but as there are too many variables involved and more is known about tests and testing they will no longer be comparing like for like on the two different end results,
Hi Webster,
If you get neurological symptoms I think you should take a Baby-Aspirin with your food every day. 75-100 mg is enough.
Most Specialists, waiting for results of the 3 bloodtests taken twice with 12 weeks between the tests, start their patients on a Baby-Aspirin as it will thin the blood a little but it is not an anticoagulation drug.
Antiphospholipidsyndrome means too thick blood that has to be thinned.
As MaryF says, ask your GP to do the tests.
"Sticky Blood Explained" by Kay Thackray is also a very good book about APS. I have got it in pocket here in Sweden. Prof Hughes, who has written several books himself, says it is one of the best books written about our illness.
Let us hear how it goes for you.
Hello Lure2. You are so knowledgable when comes to this disease. Did your neurological symptoms improve on Warfarin? I am on baby aspirin waiting for the warfarin treatment. It has done nothing to my neurological symptoms but has improved others. Thank you.
Hi, Thank you. For some time I was an admin here but stopped because I wanted to paint more paintings but could not because of pain in thumbs etc. The Corona makes it possible to be here and learn from others and also try to help. I have been here for at least 7 years.
Yes the Warfarin was my lifesaver and all my neurological symptoms actually disappeared when I was at an INR of around 4.0. Selftesting. Still have some Auras and tinnitus.
Hope you have a Specialist who is knowledable as that is the best gift you can give to yourself when you have this illness.
Are you positive to Lupus Anticoagulant also? I am positive to all three and thus it can be difficult to keep a steady INR. But you will learn.
Hello Lure2. Thank you for your time and response! After three years of weird symptoms and being misdiagnosed with MS I have been finally diagnosed with primary APS. I am positive only to anticardiolipin IGM antibodies. Moderate high values (61 and 60) in two determinations separated by three months. I am being treated at an excellent hospital in Florida ( Cleveland Clinic) but they do not have anyone with expertise treating this disease. I am trying to find a doctor with expertise treating APS. I have neurological symptoms and also small white matter lesions in my Brain MRI. Hopefully I get better with treatment. Aspirin inproved some of my symptoms but not those related to cognition e.g., memory loss, concentration and my vision which is a but blurry. I am so happy to have found this site! I do not feel alone anymore. Thank you and I hope that you are feeling better! Orlando
Hi
I managed to get hold of a great book called sticky blood explained. It was recommended by Prof Hughes who is the guy that discovered APS. The book goes through all the various symptoms of which there are many. It is written by Kaye Thackeray who was one of his patients. I am pleased to say that it is written in an easy to understand way rather than like a medical paper. I had many questions and he recommended the book and I couldn't put it down as everything even my late teenage years all suddenly made sense. I then realised all the things happening within my family and extended family all on my mothers side made complete sense. I passed it on to Aunts/Uncles and Cousins and one by one they got tested. It is interesting that some had clots, some had Rheumatoid and some had Epilepsy Miscarriages, migraines fatigue etc. I believe you can still obtain a copy on Amazon. You will need a specialist to get it confirmed but some interesting reading while you wait.
Good luck
Kaz
Hi Webster,
As autoimmun illnesses are very alike both in autoantibodies and also sometimes in common symptoms (especially SLE and APS).
If we have only APS it is called Primary APS (PAPS), but more than 30 % of SLE-sufferers may also have Kardiolipinantibodies (very usual for APS patients) and thus have both APS and SLE. There are differences though and that makes it difficult to diagnose even for the Specialists.
I suggest you look at the link to the APS charity that Mary F suggests. There you will also find words from Prof Graham Hughes who found this illness more than 30 years ago and who has therefor great knowledge of APS.
APS Symptoms
APS Symptoms
1 positive test, pregnant -advice please...! 
AIP Diet & Hughes Syndrome
