New and looking for advice

[Dani92]

Hi all! I'll start by saying that I haven't been diagnosed with APS - or tested even - but I would like to share my story and hopefully receive some advice on where I should go from here! I apologize it's a lengthy one.. but I will try to keep things relative and I am appreciative of anyone who actually reads it!

I'll start by saying that my mother has Lupus and had a hemorrhagic(sp?) stroke when she was 46. I am 26 and had been healthy for most of my life - with nothing more than a thyroid nodule and a fractured sternum on my charts - and even had two uncomplicated pregnancies ending in a full term healthy delivery.

(Maybe Relevant info) A year ago, I became ill with what I thought was strep but was negative. A week after feeling better, I started to notice my joints in my wrists and knees hurt each morning. A couple days of dealing with this and I came down with a very sudden fever. I hurt, all over. Not your typical fever aches.. but days of severe pain in every inch of my body, I could not lift my arm in bed to grab a phone and my husband had to carry me to the car in order to get to the hospital (I was very close to calling 911!). I was put on prednisone for a of weeks, AFTER which I was finally given blood work which showed.. nothing.. no inflammation..

(Definitely Relevant info) The beginning of this year we received some good news - we were pregnant with our third child. A week later I had a threatened miscarriage and discovered I had a very large subchorionic hematoma. I ended up making it until 19w4d when the SCH was detaching my placenta and caused me to go into labour losing our baby boy. A few days later I was admitted into hospital with a postpartum infection, and a day after that I was diagnosed with bilateral pulmonary embolisms via a CT scan. I was on eliquis for 3 months and taken off just last month.

During my pregnancy I joined a support group - where I discovered many of the moms with subchorionic hematomas had APS or another clotting disorder. When I was diagnosed with pulmonary embolisms, the possibility festered a little more in my head (although they were considered provoked by pregnancy). After looking more into APS I learned about livedo which I have noticed on at least 5 occasions - a red or purple rash resembling chicken wire.. on my thighs.. for no apparent reason. I am not sure if it is coincidence that my mom has Lupus and has had a stroke in her 40s.

I feel like I'm paranoid and afraid to bring this up to my doctor (she's a wonderful lady but not very useful as a doctor). Do you think this could be Hughes Syndrome? or something else? I have never requested to be tested for anything, ever - but I'm terrified of more losses and I'm terrified of another PE

[HollyHeski Administrator]

Hi, welcome, I'm sorry you've been through the mill.

You have a lot of key signs and yes its worth you being tested, you are right to be worried about further pregnancies and blood clots. Your symptoms/health issues could relate to several autoimmune diseases but we all have to start somewhere.

Please look for a specialist of Hughes/APS as this is so important for us for someone to look at the whole picture.

We have a list of specialist top right or look at GHIC.world. Also post where you are so others in your County/Country can recommend further.

[Dani92 in reply to HollyHeski]

Thank you so much for your help - not sure if I can edit or how, but I am from Canada!

[MaryF Administrator]

HI and welcome, thank you for the great write up and also sorry for your loss. Yes your history is very indicative, often the trio of disease is Hughes Syndrome/APS, Sjogrens Disease and also a Thyroid problem. Your relative with Lupus is also a hint in that direction, and a very definite marker is Livedo Reticularis. I enclose here the charity website, not just for you and your family but also for your doctors. ghic.world/

It is very important that your doctor does all 3 of the blood tests mentioned on the charity website, and also included is a list of specialists across the world, it is important that you and your GP have somebody with full working knowledge, not just half of it. Tests also to include are B12, D, Iron and Thyroid all these results need to be good to help you be as well as possible. Your history so well written and will be pretty familiar to most of us on here. MaryF

[Dani92 in reply to MaryF]

Thank you so much Mary - you make me feel less like my feelings are just paranoia! I wouldn't have known about the other tests - though I know I have very low ferritin levels due to my SCH bleeding 😣

[KellyInTexas Administrator]

Dani,

Hello!

I’m a mother with a daughter just your age. ( she’s one year older. I myself am almost 50.

I lost my mother when I was your age to what we now know was APS.

I had many miscarriages, etc etc etc.

I also have the livedo. ( chicken wire! That’s a great way to describe it!)

Our daughter is starting to show signs as well, but is testing negative. She just became engaged and would like to start a family in about a year or two. Even if she remains negative in tests, she will likely be under the care of a Gyno who honed about APS just because of the strong family history and her own symptoms like Raynauds / poor circulation/ gluten intolerance/ and now... slipped and bulging discs In her cervical spine with no injury.

[Dani92 in reply to KellyInTexas]

Hi Kelly! I am so sorry to hear I'm glad she will be seeing someone who is that attentive! I did forgot to mention I have raynauds as well! Since I was 14!

[Dani92]

It was actually scanned last year when I had that crazy episode, along with bloodwork. I didn't hear much except that it hasn't grown. The nodule was found over a decade ago, probably around the time I found out I have raynauds but that may be coincidental. I know in Canada we need a referral to see a specialist - I just feel like I shouldn't go to my doctor unarmed looking for a referral.. since she's a little bit of an airhead and doesn't seem to be able to put two and two together on her own 😅. I'm not one to say negative things about anyone, but I think my honest opinion of my GP is relevant right now

[Lure2]

Hi there,

I have read the above and I see you have got a lot of very good advices.

I am 74 years old and live in Sweden and i am triple positive with high titres. I want to say that the most important thing with this illness is to get a Specialist of autoimmun illnesses (I know there are very few in Canada but still do everything you can.....) and to be properly anticoagulated as this is "Sticky Blood" that need steady and high enough thinning. I think there is a posssibility that you may have our illness (many are negative to the antibodies from time to time but still have the APS) but it is a good thing to get a diagnose from a knowledable APS-Specialist.

Good Luck!

[Gmagolf]

50 some years after 3 miscarriages I was diagnosed with APS. At that time had no idea what caused them. The good news is I have two grown children now, although I hemorrhaged all through pregnancy with second child. Hang in there and ask for blood test for APS.

[Tofino5]

No you are not being paranoid. You’re a thinking, intelligent woman looking for answers and protecting your self and your family.

I’m sorry to read about your miscarriage. You have a good plan to go to your GP armed with information. It’s a relatively “new” disease in many countries, Great Britain leads the way. You’ll get lots of good advice here and personal experiences. APSers can respond differently to meds, one size doesn’t fit all, but thankfully there are a few options available to us. Don’t give up if something doesn’t seem to work. And keep educating yourself and looking for answers.

BYW I’m in Colorado, I lived in BC for years.

[Rosemary76210]

Would just like to suggest that you take pictures of the livedo if it happens again. This would help the doctor with the referral necessity.

[Dani92 in reply to Rosemary76210]

Thank you for mentioning this! I absolutely will. I've taken pictures before because I thought it was completely bazaar but that phone has recently called'er quits

[Tammylola2012]

Hi Dani92,

Remember you are your best advocate when it comes to your health. Educate your self about conditions and possible tests available for a diagnosis. This is a very tricky disorder and many of the medical community are still uneducated about these disorders. Agree with APsnotFAB as far as testing go...if you are still trying to expand your family with beloved little ones then you definitely need a diagnosis so treatment can coincide with future pregnancies. I am so sorry for your loss and hopefully you will receive much support in this group of wonderful resources and people. If there is anything I can do to help or answer for you I will definitely give my input. Best wishes, love and light.

[Haleyhigdon]

First and foremost, I’m so sorry for your loss.

Furthermore, you’re not crazy. For a seemingly healthy adult, those occurrences aren’t normal. Push your doctor(s) to test you for APS because if you have it, you’ve had a couple of clinical manifestations and that isn’t good.

I have a similar story. My father died when he was 27 from a post-surgery (quadruple bypass) heart attack. He was diagnosed with Lupus SLE and APS 2 days before he died. My dad had so many indicators of both diseases that he ignored for years, which is what led to his early demise. 9 years ago I miscarried and I sort of blocked out the entire event. I didn’t link it to APS because I hadn’t shown any other obvious signs of the disease. Fast forward to 2014 and I hemorrhaged behind my retina. My optometrist told me that I should get tested for APS due to the hemorrhaging and my family history. After a lot of blood work, I didn’t test positive for any antibodies and my clotting factors were normal. I started to monitor my weird symptoms and they were textbook signs of both Lupus and APS. It has been a little over 4 years and I just now received a positive APS and Lupus SLE diagnosis. It was a costly and frustrating few years, but getting tested repeatedly may have saved my life. Your mother may even have APS and not know it. A lot of patients with APS have Lupus.

Trust your gut and get tested!!