MaryFAdministrator12 years ago

A debatable topic which still has no definitive answers... I guess from listening to others... I know this is not an ideal answer. but perhaps both! MaryF

jessielou12 years ago

Hi rach

the juries out on this one! Seems to be strong family history in some of us! Medical profession seem to think not hereditary but are still learning by Hughes , so no one knows yet.

Hope you well today.

Take care gentle hugs sheena xxxxxxxxz

TheKid12 years ago

I, for one, am just now learning more about APS after years of medical problems that seemed unrelated or that were previously diagnosed as other things. Based upon what I am learning now, I believe that I have had it at least since I was in elementary school, which might suggest that I was born with it. I can still remember havnig awful lower back pain in elementary school and having problems with my back to one degree or another as I grew older. As a youth I suffered from awful headaches as well, which abated somewhat as got older. Other little clues that lead me to believe that this is not something new.

cami in reply to TheKid12 years ago

I had never had any medical problems in the whole of my life! There is no family history of anything either! I found out I had aps and Sjogren's after having cervical neck surgery.....about 18 months later! In France they have put it down to trauma!

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london-lass12 years ago

Interesting.

I had no problems until I had a negative reaction to an anaesthetic. Obviuosly a trigger like cami

Lucky6712 years ago

I thought it was believed to be genetic and some kind of trigger 'sets it off '.

(Something I have often wondered - no medical evidence for etc - I tested positive and now test negative... in the years between I had a major allergic reaction to something - not anaphylactic but bad enough to be given steriods and the cause was never found...did that 'cure' the APS?)

Kentish_Man12 years ago

Mine was triggered by a Flu and a Hepatitis injection delivered at the same time. It also brought on Polyarteritis Nodosa a form of Lupus/Vasculitis. So maybe it is present, but dormant, within you via your genes until something triggers it. From reading the above I would say that was a likely scenario.

MaryFAdministrator12 years ago

My late father definitely had this... also Thrombocytopenia. also rheumatic fever. my sisters both of them. My daughter severe daily headaches and Henoch–Schönlein purpura, also mycoplasma pneumonia plus a host of other ailments and infections... which does not fit with their very very healthy diet and exercise daily! My daugher also a small heart valve and murmur Mx

rach108198512 years ago

Thnx all.i blieve my grandmother had it bt nt diagnosd n my brother has sumthin similar.i neva had anythin serious wrng til 2008 then thort i only had flu bt had multiple clots n pe's.nt lng afta gt diagnosd wit aps.quite quick compard 2 most ov u realy.i dnt realy feel any dif 2 b4 even tho i stil ful ov clots frm 8 mnths ago.x

taffydaffy12 years ago

I was fine until the birth of my 3rd daughter and i have asked many times to different doctors could the prostaglandins cause Apls

Herb12 years ago

Not a silly question, but would knowing the answer help you in any way?

If not, just let it go. Some things are not really helpful for us patients to focus on.

paddyandlin12 years ago

Hi Rach

The juries out on this one! as some say there is a heridary link as other do not so in answer is no one knows yet, and in my opinion i think if it settles your mind knowing then do a test but be aware as a doc said to be up until adult hood its very difficulkt to diagnoise but that still has not stopped me as a dad wanting to know when i see symptoms.

LisaWA12 years ago

Hi, I think I was sick with this at birth. My mom recounted that I was sickly and did not feed well...always sensitive to foods, lots of infections, headaches young and eye blurring, dizziness, ringing in my ears. When I was young it came in flare-ups. Now it is constant.

She probably had it as she had RA and died at 56 from a heart attack which Hughes suffers do if not treated. Her Dad may have had it... he had heart attacks, strokes, and severe abdominal problems...I think clots to intestines caused that.

My second cousins' baby was born with a stroke already! Just a year ago...they are still trying to figure that one out. I have tried to get her info on Hughes...hope she hears it.

Lisa in Wa

Hidden12 years ago

My opinion is that we're genetically predisposed to certain conditions and depending on the environment we are exposed to determines whether or not we end up developing the condition or not. I think that my great-grandmother had something similar, I remember my grandmother describing her terrible headaches that she would have to black out the windows and go to sleep to get rid of. Sounds like a migraine to me.

I think my "trigger" was when I was 17 I got mono. Epstein-Barr (virus that causes mono) has been linked to so many things, and much farther reaching than just a few months of feeling sick. I've never been the same since.

I also noticed that stress currently plays a big role in symptom management for me, so much so that I gave up a career for a less stressful and less physically demanding job.

pluto512 years ago

Lost my message. try again.

Is, APS genetic? Before APS known,my aunt lost her first baby, then one of her twins. She died of her first stroke, same as my mother, another aunt, and my maternal g.m.

I have had 7 strokes and countless TIA's - 3 since Sept. I attended the lupus clinic for 4 years,but I was never seen at my worst, when horrific symptoms lasted for weeks on end. One doctor has said since that I do not have APS? I tested positive on 2 occasions and my son also was diagnosed as a mild case.. My son also has seizures now. I had one with a stroke. I frequently get red and very itchy palms and fingers, and above my nose is always pink, and my eyes get very sore and itchy.

Any comments?

paddyandlin12 years ago

Hi Pluto,

welcome to the group have you thought of getting tersted as it seams a very strong possability that there may be APS in your family and a lot of the symptoms you mention are listed as a symptom of APS.

May be worth speaking to your doc.

Paddy