How many of you have just APS without diagnosis of Lupus? Just wondering as I don't have Lupus but do have serious APS.

[77tiger05]

[janjan78]

Me!!! =D I have had APS since 1998 one of the early diagnosed ones of this condition but I was symptomatically& blood tested for lupus in 2002(i think?) but it came back as negative =) buuuuuuut I'm on another part of HU just now trying to piece together my migraine/APS jigsaw & wondering if an APS flare up has maybe caused my migraine attacks & has it now maybe brought Lupus in the frame again........will try my GP again =(

[BrazilianBade]

I do. I was diagnosed with APS in 2009. Despite having certain symptons such as swollen fingers, and pain, the blood tests cannot determine whether I have lupus or not. Honestly it sucks. Like you, I have a lot of migrane. I cannot control my INR and I am always exhausted.

[janjan78 in reply to BrazilianBade]

so what have they got you on....heparin/warfarin/aspirin??? Cause am only on aspirin but if I have any kind of surgery or even general anaesthetic for investigations they whack the heparin into me......but am trying to get a definite APS/LUPUS/MIGRAINE connection then all 3 can b treated under 1 hat (in my dreams eh?!)

[tim47]

Yes, just APS

[77tiger05]

I spent 4 months in the hospital in 1995 and lost my left leg to 5 clots, then had a post op stroke later to be from APS. I had a wonderful resident doctor who just wouldn't give up on finding an answer to my symtoms. She would spent most of her nights in my room researching the computer, hard to do in those days. But finally found it!!!! I lived in San Diego, Ca. then and now live in North Carolina. The doctors here have been pretty good about researching everything. I have had to help them along the way, but that's just the medic in me. I worked in Medical Records as a coder for almost 25 years. Traveled all over the country helping hospitals with coding, etc. Can't do it anymore because when i had my stroke I lost vision in my right eye. But I loved my job and really hated having to give it up. I now have double vision in my left eye, so they won't even let me drive anymore. It is hard to read, etc. Anything else anyone would like to know, just ask me, I'm open to all questions. Oh, I gained a lot of weight after losing my left due to lack of exercise. Any ideas on how to really get some good exercise in. I've tried about everything.

[SassyOne]

I have known i have Raynauds for a few years but I was just recently diagnosed with APS. I suspect I have sjogrins, I am waiting to see the hematologist still.

[lucky1]

I have APS complicated with factor V leiden (hereditary), now also have diabeties type2

lucky1

[lcol65 in reply to lucky1]

Hi I am exactly the same, I have APS controlled with asprin but also have factor v leiden and have had diabetes type 2. just been put on metformin for the diabetes, a year after my diagnosis. I have chronic fatigue syndrome and suffering from the effects of vulva cancer 10 years ago. But we have to keep smiling. I'm in St Helens, Merseyside. xx

[struggling]

Count me in - APS/no Lupus. Having experienced only one PE, I doubt if many would say that I have 'serious APS', but it sure feels serious to me!

[MrBigDog in reply to struggling]

I'm right there with you, only had one "Episode" of PE, but it was in both lungs and doc said there were so many clots he couldn't count, called it a "Shower" of clots...also, I am APS only.

[struggling in reply to MrBigDog]

MrBD - Snap! you could've been quoting my doc there. Exactly the same report.

[kathyD64]

Count me in 2 by the way struggling trust me hun yours is serious and aptly calling yourself struggling suggest you are in same or similar boat to us all

Me defo APS with 3/4 factors for lupus but told don't count unless 4 factors but dx fibro in 2011 APS 1990 Kathy x

[london-lass]

Hi

I am primary APS... no lupus but the symptoms are a pain. 2 clots later I am on indefinite warfarin. All fun and games! INR set at 4-4.5. Self testing but not self managing. Now with a dislocated shoulder needing surgery. Oh joy!!

Ann

[margaretjo]

I also have apls and factor V Lieden but not lupus

[janette]

i have lupus and aps

[Leigha]

Hi. I have only aps, diagnosed 2008. Also have low factor VIII levels, wonder if anyone else has that?

[Lozzer]

Hi. I have serious APS diagnosed around 2000 but no lupus. lots of other complications...hemolytic anemia, sudden hearing loss but no lupus.

[Lozzer]

just to add to my last post..i've had no migraines or pains and aches so fortunate there.

[CanaryDiamond10]

I have APS and no lupus. My rheumy says I have "fibromyalgia-like" symptoms, but she doesn't quite have enough to hang the diagnosis. I also have CNS vasculitis (sometimes called cerebral arteritis) which is deemed "quiesscent" (quiet) at this time. I have it active over 5 years. It's been quiet for about 2 years. Osteoarthritis. Diagnosed with APS, anticardiolipid antibodies positive in 2011. So it's surprise after surprise for me. They are also suspicious of MS. I can't see why it can't just be tested for and be done with it whether it comes out positive or negative. I just hate being left to hang in the wind. I'd rather just face whatever it is and be done with it. If I understand something I can fight it, It's the unknown that bothers the heck out of me. I am, indeed, a curious cat.

[77tiger05]

I would just like to say that to all who answered my question, it has been enlightening. Great comments!!! THANKS!!!!