Antiphospholipid Antibody syndrome

@spyder01jo Welcome to Mayo Clinic Connect! I’m sure someone on MCC will be able to explain the lab values and tests. But first, I think we need to know a little more about you and your health problem . Did you get these values from your doctor or the patient portal? What has your doctor said about them? A member will get back to you!

I have 3 doctors trying to figure out the correct treatment. Everyone has tried to explain and many more test are being ran. I live in a small village and all my doctors agree there is no one in this state that fully understands this illness. Everyone agrees I'm sick. It started with a clot in abdominal aorta then my right jugular. Started with xarelto then warfarin and lovanox injection. Even on several blood thinners now both jugulars, left corodid, right arm and leg have clots. I'm soon to start chemo to stop my body from seeing my red blood cells as the enemy. My doctors are trying to get mayo to accept me as a patient.

I have an oncologist, hematologist, and a rheumatologist all trying to figure this out. All I've really been able to understand is this is a rare disease and there isn't any FDA approved treatments everything is trial and error until they figure something that will slow the disease from progression so quickly

@spyder01jo
I also have antiphosphlipid antibodies and no known cause. Your immune system is causing your body to clot blood abnormally. It is important to find out what is causing your immune system to be activated and increased inflammation. Need to calm your immune system. Have they prescribed steroids? Have you had Covid vaccines and/or virus or a recent virus that triggered your immune system to cause clotting?

Here are some links to information. It is so important to educate yourself so you can better advocate for yourself and discuss your condition with your doctors.

1. https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/symptoms-causes/syc-20355831

2. https://my.clevelandclinic.org/health/diseases/21685-antiphospholipid-syndrome

3. https://www.nhlbi.nih.gov/health/antiphospholipid-syndrome

4. https://medlineplus.gov/genetics/condition/antiphospholipid-syndrome/

5. https://www.acc.org/latest-in-cardiology/ten-points-to-remember/2018/05/24/13/09/diagnosis-and-management-of-the-antiphospholipid-syndrome

6. https://www.thebloodproject.com/wp-content/uploads/2022/07/APS_GUIDE.pdf

7. https://ashpublications.org/hematology/article/2013/1/675/20728/Antiphospholipid-syndrome

@spyder01jo
I also have antiphosphlipid antibodies and no known cause. Your immune system is causing your body to clot blood abnormally. It is important to find out what is causing your immune system to be activated and increased inflammation. Need to calm your immune system. Have they prescribed steroids? Have you had Covid vaccines and/or virus or a recent virus that triggered your immune system to cause clotting?

Here are some links to information. It is so important to educate yourself so you can better advocate for yourself and discuss your condition with your doctors.

1. https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/symptoms-causes/syc-20355831

2. https://my.clevelandclinic.org/health/diseases/21685-antiphospholipid-syndrome

3. https://www.nhlbi.nih.gov/health/antiphospholipid-syndrome

4. https://medlineplus.gov/genetics/condition/antiphospholipid-syndrome/

5. https://www.acc.org/latest-in-cardiology/ten-points-to-remember/2018/05/24/13/09/diagnosis-and-management-of-the-antiphospholipid-syndrome

6. https://www.thebloodproject.com/wp-content/uploads/2022/07/APS_GUIDE.pdf

7. https://ashpublications.org/hematology/article/2013/1/675/20728/Antiphospholipid-syndrome

Thank You so much!! Going out of my mind!! stuck in home due to failed laminectomy also. I'm a vain person and I cannot get my hair or nails done in 5 months!! Not me! I have a wonderful husband, I thank him constantly, buy him things to let him know how thankful I am. I look up at the sky and don't believe anymore! We both have no family left, our kids have their own life.