Just wondering how APS affects everyone. Who do you know that has it? do you have it? How does it impact you if it does? do you know what it really is and what it does to a person?

I don't know anyone that has it other than me. Unless you count Courtney Cox, who I don't really know *laugh*

I haven't known about it that long, so I'm just learning.

As for how it has affected my life, there have been some changes:

- I'm on Coumadin daily
- I have Lovenox shots available for bridging for surgery if needed
- I'm still at the point of getting PT/INR taken every two weeks at the coumadin clinic
- I have to wear a medicalert bracelet for the rest of my life
- I have had to get medical changes in order to continue in Tae Kwon Do
- I tend to put on a bit more protection if I'm going to be doing anything active, like scooters or skating with my kids.

Those things are already becoming a part of my life that I don't even think about.

Well, normally APS does not affect my life. I was diagnosed 7 years ago when I got a dvt which was attributed to the pill, smoking and aps.

I am about 9 weeks pregnant so now it is affecting my life. I am currently on lovenox twice a day for the next 7 months or so.

My problems started out in grade school when I developed Fifth Disease after that I started having problems with headaches and blood noses, in high school I got the Epstein Barr Virus (EBV) and never have been the same since really. I had dizzy (vertigo) spells most of my high school and my first parts of college. My blood pressure would spike during those times, have problems seeing and speaking. My body would twitch and I would have these horrible headaches but I was told that it was anxiety and that I didn’t want to be in school. I was an A/B student. I don’t think so. So from 1985 to 1992 I really wasn't feeling well at all. I got a reprieve and finished up with my degree (BS in Public Health Education) and joined the military. But in 2000 my problems were getting worse again and left because of medical problems that they didn’t know about. In 2002, I started having more neurological problems.

One night, I had a TIA (transient ischemic attack) with an amaurosis fugax (temporarily loss of vision in the eye). That got dismissed, as I was "too young to have these kinds of problems". They started me on aspirin and I stopped the birth control I had been taking as they were telling me that was the problem. Two months later I ended up in the hospital with a DVT (Deep Vein Thrombosis). They never did a full clotting panel on me that time. They said they did and that the tests came back normal, only to pull the records and find that the tests were cancelled. I never got a full panel until I started pushing for answers. That is when I got one positive test that was “equivocal” but somehow the hospital has lost that test result. I was started on Coumadin® and after much trial and error my therapeutic range is 3.5-4.5 because I am one of the lucky ones who has managed to re-clot on Coumadin®. However, since being placed on Plaquenil®, we have been able to reduce that my INR to 2.5-3.5. I also have to take aspirin.

Recently, they have decided that my diagnosis me with a touch of Lupus. But now they said it isn’t Lupus because I all the sudden don’t have enough symptoms and my blood work is ok again. I guess you need to have everything happening at once. I know that isn’t true but that is the way the most doctors think. So, it is not just Thrombophilia with clinical features of APS and Thrombophilia secondary to Lipoprotein(a) and MTHFR. Either way I have clotting issues.

I know there is current research looking into the connection of the Lipoprotein subgroups and APS. There is also a strong association with EBV and Fifth Disease and Lupus & APS. So, now I wonder how long I really was sick. Now thinking about it, I was never healthy. I always had some sort of cold, some sort of ear infection, always taking antibiotics or Dimetapp. I was always tired as a kid and just never could keep up with my classmates. I was always cold as a kid and would turn all these funny shades or red, white and purplish/blue. At the time, we just thought I got frostbite easy. I never really did ok in the sun. I got “sun sick” very easy.

Getting doctors to listen to me and take me serious has been a battle, especially in the ER. I have had to start a medical symptoms journal. That is what helped me get my INR up from the 2-3 range to the 3-4 range (and the reclot cinched it). I have also started a photo journal for the times that my face is drooping but I know by time I get to the ER or call 911 and actually get seen it will be better. I have showed those pictures to my new neurologist who said that yes that is a TIA that is triggering the migraine, specifically verterbrobasliar TIAs. The pictures I had been taking helped save me and got the diagnosis on the record to increase the odds the ER will listen. The neurologist also felt what I was having in high school and college were TIAs, not the panic attacks they thought I was having. I am also taking pictures of the various rashes that I get. Those pictures have also helped me get on Plaquenil®. It was Livedo & Raynaud’s that I had and that is getting better now. I can put my hands in the freezer without gloves on now. I don’t need it as high anymore and I am not noticing my INR changes as much. J

I have had a heart attack. The ER thought it was “acid reflux” and sent me home. After not feeling well for two months, I pushed for an answer and they did a perfusion study of my heart. That was a painful test. From the time they started injecting that Persantine & tracer, I was crying in pain. The cramp in my arm was crazy. By time the drug hit my neck and chest my vision was cutting out and the pain in my chest was nuts. My body, especially my legs felt like dead logs. They refused to reverse it. I ended up in the ER because the headache I got was so bad I was throwing up. They found a previous posterior MI (Myocardial Infarction aka heart attack). At the time, it was dismissed as a bad lead. One and a half years later, the angiogram shows my arteries clear so of course it was “acid reflux” and that perfusion study must have been wrong. Finally it has been decided that I do have Cardiac Syndrome X but my cardiologist won't write it down as that because he really doesn’t believe the syndrome exists in anyone. I have sent that perfusion study to several other medical professionals who say it is Cardiac Syndrome X – classic case. So, it is still being dismissed. Other than the small hole in my heart – some of the bubbles crossed over and some didn’t so that is in the air really – and no one has repeated that test, supraventricular tachycardia, the occasional run of PVCs & PACs and mitral valve prolapse that has gotten more pronounced over the years; it is ok. My kidneys have recently decided to give me problems but that seems to come and go also but is always blamed on hormones or salt even though it isn’t that time of the month and I watch my salt intake.

My Lymph Nodes have been swollen for over a year now. They started out in my arm pits & neck (Supraclavicular & cervical) lymph nodes...now are in my groin to boot. They were movable at one point and time, now they are hard, not moving and in a chain. A radiologist confirmed these are lymph nodes via ultrasound and sees them and documented it. Some of these are the tip of the ice berg and run into my chest but these do not show up on a chest x-ray. My doctors were doing monthly blood draws, CT, etc to figure out what was going on. Nothing shows up in me. CTs, MRIs and Ultrasounds can miss bile stones the <myspace>size</myspace> of garden peas in me so why would I think a scan looking for lymph nodes would be fruitful. It now decided that all the sudden I just have large lymph nodes.

Meanwhile, my lungs are getting more and more goopy and I start having more problems with the "GERD". I am maxed out on Protonix® and Zantac®. I really have to watch my sodium otherwise I am in trouble lung wise. I love water but will drown myself and have to take Lasix® just to shift the fluids out of my lungs. Have to eat small meals because of this "GERD". I just get such a blood rush it isn't funny...and pain...crazy. I don't want to eat but know I have to. I look like I have lost weight in my face but my gut has huge bloat. Doesn’t matter how much exercise I get. If I bend over at the waist too long, I feel like I am going to pass out. You know the ears buzz, the vision goes to grey and you don't know if you are going to puke, pass out or both....get all pale and sweaty...shock like really. It is almost like I am cutting circulation off to something in my gut. No more bending over to tie shoes. I have to be very careful now.

My Raynauds/Livedo has gotten worse. Vertigo is coming back, which the neurologist, ENT and GP have decided was a microvascular issue many moons ago. Headaches are getting worse again, my guess, it is connected to the Raynauds/livedo which is also microvascular. I start having problems with cystitis again. Mind you I haven't had problems with this since 2002, shortly before I started clotting the first time around with the amarousis fugax and DVT. The urologist feels this is due to microvasuclar changes in my bladder from my autoimmune & clotting problems.

I have the left sided weakness documented by a physical therapist which she said is consistent with her 80 year stroke patients. My balance is that of an 80 year old. This was a good day for me. I still have TIAs despite having a therapeutic INR and being on aspirin and Plaquenil®. The verterbrobasliar TIAs are building up have caused hearing loss and suspect are causing the increased loss of balance. I am tired all the time and hurt but this is not depression.

Recently, my GP & I feel I had a small PE a few months ago. The ER was all interested right up to the point I had to correct them that I was on Coumadin®. As soon as they heard that, I was brushed off. They refused to do the VQ Scan because the d-dimer was negative. I just took my discharge papers and went home and kicked myself for not calling an ambulance the night before. One of those, they will call this a panic attack, even though it wasn't. My heart was missing a whole mess of beats and racing, cold sweat, nail beds were pale, lips were pale, couldn’t breath and felt like I was going to pass out. I tried to fix it at home by ruling out what they were going to blame it on – anxiety - but it didn’t work. I passed out and woke up in the am. Finally went in but, I wasn't as sick as I was the night before. Hind sight is always 20/20.

There are times I think I can get back to normal. But every time, I start getting back to "normal" or picking up my pace my INR drops or something else happens. My biggest problem is predicting how I will feel later on that week or the next day, etc. Vertigo is my biggest problem and now these recurring TIAs. APS makes it very hard to hold down a regular job and a normal life.

I'm twenty years old, and I have one daughter I had when I was seventeen. Since then I have had five miscarriages.

My husband and I have wanted a family of our own for a long time, but I recentally found it was Hughes'. SO, taking the baby asprin daily, and the prenatals. I must admit it has made me feel better in general. Especially with fatigue. But losing one baby is hard. Losing five is awful. But giving up on your dreams isn't something I'm willing to experience, now that we know we can be more careful.

My husband has APLA/Hughes - he's up to 20mg of Coumadin daily. He wasn't diagnosed until he hit 30 - at 19 he had brain surgery for a blood clot in his brain, at 30 he had a stroke and only because his wife at the time was in the military and one of the docs on base had studied under Dr Hughes did they figure it out. My husband also has grand mal seizures for which he takes medication - seizure free for 5 months now.

We met, fell in love and right before we got married he told me about his diagnosis. I didn't hesitate to say lets still get married - our biggest concern is being able to get pregnant and our children being healthy.

I've read all kinds of literature and we've ordered books. He was in a car wreck 3 weeks ago and I am the one who almost had a stroke (metaphoricly speaking) because his chest slammed off of the steering wheel and I understood the many possible complications - we spent days going back and forth from the hospital.

We moved out into the country and none of our doctors know what he has - so we educate them and give them websites for research. His hematologist knows but she's got a poor bedside manner - that of an ice cube. He takes his meds - we eat healthy and try to keep all things green out of his diet. I'm grateful he was diagnosed and we can work to make his life long and healthy. I still cry when we learn about more possible complications but we just factor them in and try to be prepared. I just wish he had someone who has it to talk to, we keep seeing that its primarily women who get it- is that true? are there any other guys with it out there?

Emma

Yes there are several guys with this disease. You will find several more at www.apsforum.com. :)

its been hard for me because in the beginning i had to give blood every week now only once a month which has made it easier on me and my family. my doctor is happier to he was always worried about me having another stroke. the other thing is the bruising i wish i didnt bruise. does anyone else here have that effect?

Well Im 18 weeks pregnant now and feeling pretty good. the doctor did, however, want to do a bloodwork panel because of my previous history of miscarriages, so I agreed.

Unfortuneately when the results came back, I did test positive for Thrombophilia. This is a blood clotting disorder, whereas my blood clots to fast. this genetic condition puts me at high risk of developing blood clots (80-100%) which can lead to pulmonary embolism, heart attack, DVT deep vein thrombosis, or a stroke. I tested positive for HOMOZYGOUS which is a genetic gene mutation MTHFR deficience which is inherited and also (APS) Antiphospholipid Syndrome which is an aquired autoimmune defiency. Yeah, was kindof shocked and still am.

I am being treated with a blood thinner called Levoxin 60mg injections twice a day and aspirin therapy daily by Maine Medical Center. Levoxin is a low molecular heperin (anticoagulant)and is considered safe during pregnancy. It will continue til I deliver via C-Section the first week in Feb 2009 at 2400.00 a month for injections I (thank God for insurance) Ill then be changed to an oral coumadin (anticoagulant) which is not safe for pregnancy. And will follow up with Maine Cancer Center for Medicine and Blood Disorders on a regular basis for continued treatment.

I guess everything happens for a reason, I became pregnant and My husband and I are thrilled. We have been literally BLESSED!!!! Seems kind of strange though that this Thrombophilia was tested and diagnosed by my OB/GYN and wouldnt have been done if I wasnt pregnant and didnt have a previous history of miscarriages. Im so thankful that I was diagnosed early and treatment can begin so I dont have an episode prior to being tested and then treated later. I guess I can thank my unborn baby for that! Im thankful that my siblings can be tested now as there is a very good chance that they too could carry the genetic gene also.

I had no symptoms, but I will say is it explains why I lost blood supply to my scaphoid when i broke it last year and ended up with avascular necrosis...the bone died...had to be removed and screwed together due to this blood clotting disorder.

Well Im 18 weeks pregnant now and feeling pretty good. the doctor did, however, want to do a bloodwork panel because of my previous history of miscarriages, so I agreed.

Unfortuneately when the results came back, I did test positive for Thrombophilia. This is a blood clotting disorder, whereas my blood clots to fast. this genetic condition puts me at high risk of developing blood clots (80-100%) which can lead to pulmonary embolism, heart attack, DVT deep vein thrombosis, or a stroke. I tested positive for HOMOZYGOUS which is a genetic gene mutation MTHFR deficience which is inherited and also (APS) Antiphospholipid Syndrome which is an aquired autoimmune defiency. Yeah, was kindof shocked and still am.

I am being treated with a blood thinner called Levoxin 60mg injections twice a day and aspirin therapy daily by Maine Medical Center. Levoxin is a low molecular heperin (anticoagulant)and is considered safe during pregnancy. It will continue til I deliver via C-Section the first week in Feb 2009 at 2400.00 a month for injections I (thank God for insurance) Ill then be changed to an oral coumadin (anticoagulant) which is not safe for pregnancy. And will follow up with Maine Cancer Center for Medicine and Blood Disorders on a regular basis for continued treatment.

I guess everything happens for a reason, I became pregnant and Corey and I are thrilled. We have been literally BLESSED!!!! Seems kind of strange though that this Thrombophilia was tested and diagnosed by my OB/GYN and wouldnt have been done if I wasnt pregnant and didnt have a previous history of miscarriages. Im so thankful that I was diagnosed early and treatment can begin so I dont have an episode prior to being tested and then treated later. I guess I can thank my unborn baby for that! Im thankful that my siblings can be tested now as there is a very good chance that they too could carry the genetic gene also.

It does explain why I lost blood supply to my scaphiod when i broke my wrist and ended up with avascular necrosis...the bone died...and needed surgery to remove the bone and screw the others together.

Hello everyone,

I was diagnosed with APS when I was 19. years old after my first miscarriage. In the years that passed I never took any thing for the APS, just my OB saying I would need to be on shots whenever I wanted to have kids. So finally when I was 24 and pregnant with my son (by this time I had 2 misscarriages and thought nothing of it) My OB put me on Lovonox, baby aspirin and Folic Acid because the blood test showed a positive anticardiolipid antibodies and MTHFR mutation gene. I finally gave birth to my son 3 weeks early by emergency C-section. After my son was about 1 I had yet another miscarriage. I had stopped all of my medication I took while pregnant, because no one ever told me I had to keep taking it. Then in Nov. of 2007 I had a PE (blood clot in my lung) and was in the hospital for a week. After that I was put on Coumadin from November until July of 2008. I was taken off Coumadin because my levels were either to high (in the 6.0 range) or they were too low (in the 1.2 range). My levels were never stable. So my Hematologist put me back on Lovonox.

Then in May of 2008 I had what everyone thought was a mini stroke, it stated out with a Migraine, then I lost vision in my right eye for a bref period, the right side of my face went numb, and it started to look droopy. I never thought anything of it, because I was at work, and just thought it was a stress migraine. In the follow months I ended up seeing a Rheumatologist because after the attack in May my right side was very weak and tingly. The Rheumatologist put me on Plaqunial which I took for 2 months and didn’t help at all, then I tried Lyrica which made me feel very dizzy and out of it.

So now it is Sept. 2008 and I get another really bad Migraine, so I go over to the med center which thankfully they own my work and I could just walk right it. They were very concerned because as I was telling the PA about my symptoms, he noticed right in front of him, my face starting to droup, my speech beginning to slur, so he did some tests and tested my reflexes and come to find out, I now have no reflexes the right side of my body. They rush me over to the hospital and I get check out, they give me some shots and IVs and tell me I had a TIA and they sent me home.

Now since all of this I went and saw Dr. Petri a specialist in APS at John’s Hopkins In Baltimore. She again diagnosed me with APS, said i will be on Lovonox for the rest of my life, as well as the aspirin and Folic acid. She also said that I will never get full strength in my right side again.

I also have been going through some horrible Migraines which my neurologist put me on Normtriptyline since Topamax didn’t work. And I continue to see my Rheumatologist at Hopkins for the extreme pain in my hands, and the tingly feelings.

I have had APS since I was 18... right after being dropped from my fathers insurance of course!

It all started with a DVT in my left leg in 2005 a couple months later I got another DVT but this time in my right leg... both times I was hospitalized for about a week.

I managed to make it until oct. of 2006 when I was hospitalized with another blood clot in my left leg again.

Then in January I was taken back to the hospital; this time with a blood clot in my right arm; while hospitalized I threw the clot and it traveled into my lungs giving me a Pulmonary Embolism or PE causing me to code blue that night but I thank everything I was very VERY lucky and they were able to bring me back.

I became pregnant in the spring of 2007 and was put on lovenox shots twice a day, I visited my hematologist once a week my ob doctor once a week and my high risk ob specialist ever 2 weeks. I only made it to four months before I had a miscarriage, Carter had been dead for almost a week still inside my uterus before they figured out I had gotten an infection from him being in there so long and my body couldn’t pass him normally so I had to go in for a DNC. That had to be the most difficult thing in my life.

Fallowing on my almost ’normal’ course of clotting I was hit with a clot in my jugular artery around November that same year.

But nothing could prepare me for how I would ring in 2008... It had to be luck, thats all I know. I was working as a CNA at our local hospital in Intermediate Care and Intensive Care. I notice I was starting to get very short of breath and my chest got very heavy... Being almost a regular patient around there one of the nurses rushed me down to our ER. I had what they called Multiple Massive PE’s through out my lungs. And two DVT’s in my left Leg. I don’t know how I made it... in all honesty I really don’t. My hemotologist; Dr. Smith and I have a pretty unique relationship he pretty much tells it like it is. A couple days later he let me look at the x rays and you couldn’t even see my lungs we counted over 8 PE’s. I’m one lucky girl thats for sure.

Things went great over the summer no PE’s Since then... No DVT’s nothing. But life likes to toss me curve balls I swear! You know when you can’t catch a break? Yeah thats me. Around the first of December I was cooking dinner for my boyfriend Jeremy and his brother. They were sitting at our bar and I was cooking at the stove when I fell over and had a seizer on our Kitchen floor. Jeremy rushed me to the ER and I got to come home with a handy heart monitor for the weekend. lol but you know what? Things could always be worse.

As far as how has APS effected my life? I will tell you now I’m a much better person because of it. I take nothing for granted. I love my friends my family, everything! just too much to give it all up to a stupid disorder. This disease has almost killed me twice. It took the life of what would have been my first son, its put me on medicine for the rest of my life, the scar tissue damage to my lungs has made it impossible to do sports and even simple things that I used to take for granted like a walk down the street. I used to not be able to walk to the mail box with out gasping for air so you know what... It takes awhile, and it takes a lot out of you... but I am a much better friend, daughter, sister, and girlfriend because of it.

I’m ashley. and i was diagnosed with aps when i was 16 yrs old. I am now 22 and "crossing fingers" have not been affected with any serious problems with it.
I was def fortunate to find this out before I got to bad. my blood levels were pretty high though. I started taking baby aspirin everyday since i found out. and I also take vitamine E, . and mineral rich. which is really healing! when i started taking mineral rich. my levels came back normal and taking E helps! but then i slacked on the mineral rich and E and the next time my levels were back up. i think everyone should check out that stuff. its amazing. its kinda pricy. but i feel its worth every penny if your health is better.
you can go to gmc or any drug store and find it. they also have their own brand in that same drink. and its cheaper and the ingredients are exatly the same.
just thought i would share that with everyone. its def worth it.
it also helps with ppl who have depression. i get depressed easy because i am a stressful kind of person "unfortunalty" but that stuff makes me get through the day much easier! :)okay im done rambling haha
if you have any questions about it just look up miner rich online

I was diagnosed in march (09) after having a stroke in Jan. It was a classic stroke( one sided weakness vision problems and speech problems. I left a message on my Mothers Machine and It sounded like I was drunk. My stroke was a lot worse than My symptoms were the following day. They never saw a clot or anything that could have blocked the blood. At first they found "gunk" on my Myrdal valve that they believed a small piece broke off and went to my brain. Started me on the coumiden/ heprin cocktail. My ANA level was up too. At first they were concerned I had Lupus. After visits to all kinds of dr’s tests I never knew existed I was diagnosed with APS. IN June (09) I had another stroke and once again nothing was found however, my inflammation levels were up(caused by the APS). This stroke caused major problems. I was in a walker for 6 weeks. Unable to type due to my left arm and hand didn’t move for a month. My left leg drug for a month. My memory was affected by the first stroke but the senond was much worse. I have days where I don’t do much but sit and watch tv. It is hard just to carry on a conversion. I have also noticed I have trouble keeping eye contact with someone now during a conversation. I have bad days now where I don’t get out of bed. For treatments, I have to get Steroid treatments every so many weeks. Sometimes I am in the hospital for 2 hours every day for a week getting IV steroids. I also have to take week long at home steroid treatments sometimes too. NO matter where I have them I have side affect to deal with. Nausea, severe headaches, pain in in fingers ankles and toes due to thin skin, edema frequent urinating, constipation, vision issues, moodiness, depression and others. So my APS life isn’t so much Life with APS it is life after strokes and the issues with APS. I have also been told I WILL stroke again, it just matters how bad it is.