Hi Friends- 13 years ago I was diagnosed with Antiphospholipid Antibody Syndrome after I miscarried 3 times. Once pregnant for the 4th time, I was on Lovenox injections, baby aspirin and later the Lovenox was replaced with Heparin up until about 7 days before my C-section. Perfect, yet high risk pregnancy and healthy but underweight baby whi today is a beautiful, healthy, smart child. So, fast forward 12 years, I have had ablation surgery to stop the horrendous hemorrhaging of golf ball sized clots, I have made it through menopause and I am otherwise very healthy with no clots or DVT (except for my type 2 diabetes which is well controlled). I asked my factor to retest me for APS and the results showed there are no active antibodies. Imagine my delight! How do I know this test was accurate? Interesting side note. I had my genetics done and they showed I have the marker for Multiple Sclerosis. My Aunt was diagnosed in her 50's. I have had some signs over the years but nothing that is enough for me to seek a specialist. In my 20's I developed Optic Neuritis following an extremely high fever. I later read that Optic Neuritis is common with MS and APS patients. I am not looking for problems that aren't there, however, I do want to prepare for what may be to come down the road. Any thoughts?
Is it possible for APS to be reversed? - Hughes Syndrome A...
Is it possible for APS to be reversed?
I am very happy to read that your general well being & health is good. A miscarriage is very traumatic & distressing. Having 3 miscarriages, must have been devastating. The birth of every baby is special; even more so, following miscarriages.
Blood tests can & do change.
Blood tests alone cannot diagnose!
Clinical symptoms are aids to the doctor's diagnosis.
Remission is possible - and long may it continue! In other words, the antibodies aren't active and causing symptoms.
A great many patients diagnosed with MS actually have APS!
No one can predict into the future. Enjoy your healthy state of being!
Wit good wishes,
Ros
Hi, some on here started with a diagnosis of MS only to find they had Hughes Syndrome/APS. Blood tests results can come and go, I know my own do. I hope you stay fit and well but do keep an eye on your B12, D, Folate, Ferritin and Thyroid levels, which your GP can do for you, certainly low D is known as a factor in antibodies rising in some. MaryF
Thank you for the thoughtful comments and information. Kind regards.
It is now a rule: genetics is not a pre-diagnosis! True, many of us have genes which mean we are predisposed to autoimmunity (and there are 3 related "schools of autoimmunity) but before that genetic predisposition is expressed there must be a trigger. The trigger for APS is as yet undetermined, but raw data indicates the trigger may be glandular fever, aka, mononucleosis. Or a food allergy such as to gluten, caisen, soy -- etc.
And also, the growing data coming from research into nutrition and the influence of the gut biome on the development of autoimmunity. And the initial results of those investigations? Eat more green leafy green vegetables for B vitamins and fiber, and eat fewer empty carbs. Try to eat the rainbow (i.e., fruits and veggies of varying colors.) And also: do recall (and I hope you have a monitoring physician is in on this new data!
that the warfarin level should be adjusted to meet your healthy, green vegetable intake, and not vice versa!
So no, don't start planning for MS. Use that energy instead to research and then follow healthy lifestyle: healthy diet, reasonable exercise, de-stress, read, socialize and meditate.
(And note: I was a double positive when I was diagnosed in 2001, which became triple positive after the beta 2 glycoprotein antibody test was added to diagnostic criteria. ) I had dozens (DOZENS!) of mini strokes. I went gluten free in 2004, and all those scary antibodies vanished from my blood values. I still had multiple drug allergies. Then I visited Functional Medicine in 2012, where those doctors saw a high histamine count they didn't like. They put me on an elimination diet and we established an allergy to a food I ate every day: CASHEWS!??? Yep, cashews.
No cashews, and prior to my knee replacement last year I was tested for a bunch of drugs that used to send me into anaphylaxis. And -- nope. Nada. Didn't react to any of them. (I still am told to avoid them, but in case of an emergency, use of those is now a possibility.)
So, I apologize for the long post, but ... Relax. Genes do not set your future in stone.
Very interesting information and helpful. Thank you for your reply.
Hi I was diagnosed with optic neuritis aged around 25. When I was 31 I was diagnosed with MS. In 2007 I was also diagnosed with APS. Today, cutting a long story short a GP told me me medical info doesn’t say APS. Instead I have Lupus. I’ve asked for a referral back to the hospital where I spent 5 days having various tests. I’m confused, shocked and so angry. Even a MS nurse I spoke to today was lost for words. There’s confusion somewhere which I hope will be resolved. I had an ablation before having a full hysterectomy when I was 37. Personally I would insist on much more testing but that’s just my thought. Good luck with whatever you decide to do.
Thank you. After reading the replies I am starting to see a correlation with each of us. This forum is so helpful. I really appreciate you taking the time to reply and share your own experience.
What no one here has mentioned is there is no cure for APS. With that said, it cannot be reversed. Your tests can vary but APS will be there. Yes, certain things in like can make our levels higher like during pregnancy. I don’t know if you’re on anticoagulants. I am and have been for 10 years. I have not re-clotted as well and I’m blessed for that. Keep in mind that the responses here are not a good representation of everyone else’s experiences.
I have heard of many who have thought that APS had gone away, they got off the meds and then had another clotting episode. I don’t check this forum often at all but had to chime in to state the obvious as no one had mentioned it.
I’m glad you’re in good health and wish you well 😊
Is it possible to only test positive for APS in pregnancy?
Is it possible to have APS or Lupus with negative blood tests?
No positive test for APS
New to APS and terrifie.
New to APS - Trying to Get Pregnant
