Maybe have APS...not sure

Hi, all! First I just have to say that this is the best website that I have come across so far. Reading everyone's stories and comments helps me know that I am not the only one struggling. Anyway, I’m not sure if I should feel relief, fear or both. Back on 2/27/13 I had my fourth miscarriage since 2010 (one every year) and my ob/gyn suggested that I see a reproductive endocrinologist and Penn Fertility and I went to see her on 3/20/13. She mainly questioned me as far as health history and she checked my record but the best thing that she could do was to put in an order for blood work. I had it done as soon as I left her office. They took eight vials (most I ever had taken in life). Took a few days for results to pop up but I got my results back for the BETA 2 GLYCOPROTEIN test. Standard range is 0.0-7.9 units and mine is 40 units. Guess I have APS. I went back to see her on 4/18/13 and was told to get more blood work done. Had that done on 5/2/13 and still waiting for results. Meanwhile, all that I have been doing is reading anything I could find online about APS and lupus. That blood results puts everything that has been happening to me since 2006 now into perspective. I am only 35 years old but to have three healthy pregnancies/kids and to have fours m/c’s back to back didn’t make any since but from my track record below I guess these m/c’s are a blessing because they lead to the APS diagnosis.

Young years

Constant nosebleeds as a kid

Constant headaches as a kid

Always cold

Had constant leg pain that hurt to the touch as a teenager

Got mono at age 15

Early to mid twenties

Age 20 got pregnant with my first son. Bled throughout entire pregnancy. He was born not breathing but thank God they were able to revive him. Hours after his birth these giant clots started to fall out of me and my pressure dropped (NO EXPLANATION FROM DR’S FOR ANY OF THIS)

Terrible headaches at nape of head

Kidney/bladder infection in 2001

Age 25 got pregnant with my second son. No issues

In 2006, I kept having constant chest pains and trouble breathing. Saw several Dr’s. Was told I have acid reflux, asthma, arthritis of the chest wall and several lung nodules as seen on CAT scans

Dr’s only prescribed Motrin, Tylenol 3 and acid reflux meds for me

Early thirties

2010 Diagnosis-Anemia, Hardening of Leg Arteries, Atherosclerosis of arteries of legs, Skin sensation disturbance, Skin Pigment Abnormality (I went to Dermotogist cause the skin on my foot and ankle looked like a purple net but he didn’t know what it was. He gave me dry skin cream), March 2010 Kidney Infection. 6/11/2010 First miscarriage

9/12/2011 Second Miscarriage

4/3/2012 Went to PCP Dr with blotchy brown spots/scales that hurt and itch (Dr said that it was a rash and to put cortisone on it. I asked him to test me for lupus but he said he couldn’t since I was pregnant)

4/26/2012 Third Miscarriage

Messed up my knee June 2012 riding my bike and it popped, had MRI and was diagnosed with Degenerative Knee Cartilage and Degenerative Arthritis

2/27/2013 Fourth Miscarriage

Well as of today I feel like crap. Chest still hurts and my legs feel funny. Feels like something’s trying to push through. Sometimes get that electric shock feeling in my shin. Oh well, I guess after these latest blood test results come back maybe Dr's can do something for me!

5 Replies

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  • Hi Janelle and welcome to our forum.

    I am not a Dr, so I cannot advise you on diagnosis but you certainly sound like you have a strong possibility of having APS on the symptoms and now you have a positive Beata2Glycoprotein test it seems even more possible.

    Have they put you on any meds; Aspirin maybe?

    Let us know the outcome of the additional blood tests.

    Best wishes and good luck.

    Dave x

  • Welcome to our site, I am sure you will find answers to many questions you may have over time, and some real support from those who understand, our charity website also have lots of useful information also. Please feel free to keep asking any questions or fine tuning things you need more info on. Mary F x

  • Hi hon

    Welcome n glad you found us, sorry to hear of your losses, yours a very similar story to many of us on here, does sound very like you could have APS. I'm glad you're being tested and have a doc that is on the ball.

    Lots of lovely people on here who will help if we can.

    Hope you feeling ok today

    Take care gentle hugs love Sheena xxxx :-) :-) :-)

  • Hi Janelle 78,

    Yes I agree with you that this is an extraordinary website. It was a long way before I was convinced i had APS.

    I am from Sweden but it was from the book written by Kay Thrackray "Sticky Blood explained" that I undertood I had APS. The people here are kind and know from own experience what they are talking about. I have followed this website for almost a year.

    Good luck from Kerstin

  • Greetings! Sorry you had to find us, but glad you did find us! Your history sounds all too familiar to me with regards to anemia and " mono," anemia and messed up knee.

    I have found that blue emu cream gels lubricate my knee. It is not so much an anti- inflammatory as it is WD40 for the joint.

    Just in case it is helpful, I'll share: my anemia, as it turns out, was a consequence of Celiac. Probably the Hughes as well we my quasi-lupus was too as my immune system went bonkers because I was eating something I was allergic too for most of my life.

    Again, sorry you had to come, but glad you're here!

    Gina

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