I am new here

Hello guys. I am new here and i have read your posts about APS.

Sorry for the long post.

I am 28 years old now. I was diagnose with hypertension at 22 and i also have a MVP (kind of heart disease).

I was suspected of APS by my OB last year because of multiple miscarriages so she started low dose aspirin and i was pregnant that time. Lack of financial assistance, i didn't have a chance to test my self and to the work up. I gave birth to a healthy baby boy midst of all the danger and everything last April 27.

I had an appointment with my Rheumatologist and she told me to go back to her if i see rashes in my body. She checked my hands, eyes and my mouth. She also asked about muscle pain and joint pain.

I was wondering what kind of muscle pain is it? because sometimes i feel a little pain in my muscles specifically on my legs but it is tolerable and not that painful.

I am afraid of lupus because my niece died of that illness last January.

12 Replies

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  • Hi and welcome to our friendly site where we all have HS/APS.

    I read that you are not diagnosed but you have got several miscarriages but one healty baby boy when on Aspirin. I hope I have got it correct.

    I also wonder if you have got other family-members, perhaps several years ago, who have had autoimmun illnesses like your niece. We now know it runs in some families.

    Some of us can have the disease but with negative antibodies that later one may be positive and I wonder if your Rheumatologist is specialized in autoimmun illnesses like HS/APS, Lupus, Sjögrens, Thyroidea etc. If she is it is good as we need a Specialist.

    I suggest you stay with us and see that Rheumatologist, if she is a Specialist, if any new symptoms happen. I guess you are still on baby-Aspirin? Watch out for pain in lower leg at a special point, sometimes warm, red and swollen but not always.

    We are here if you need us.

    Best wishes from Kerstin in Stockholm

  • Thank you very much Kerstin for all the information you have given to me. Yes i am in a low dose aspirin im 80mg and my baby boy is turning 3 months this 27th.

    Me and mom have visited our Rheumatologist this week and my mom was suspected for having an autoimmune disease such as RA because of her complain in joint pains.

    I think my Aunt (sister of my mom) had a RA too because of her deformities in her joints according to the Rheumatologist.

    Now, i feel feverish together with back pain, clogged nose and a little cough but my body temperature is normal. within 36.5-36.8. I think it is flu because of a bad climate her in our country. By the way, i live in the Philippines.

    You mentioned pain in the lower leg. I was wondering where it was because i experience little pain around my knees when i sit down after a long period of standing up and vice versa.

    Thank you very much for all the support!

  • Hi welcome.

    Is your Rheumatologist an APS/Hughes specialist and have you been tested for it? Where are you based, as we can help direct you?

    Muscle pain/bone pain goes with some autoimmune diseases, our biggest problems usually relates to blood clots and thick sticky blood, which can cause difficulties with pregnancy and other issues.

    Are you on any blood thinners now?

    Stay with us and we can go through all your questions and give you support.

  • Hello Holly!

    I don't know if she's a specialist on APS all i know she's a Rheumatologist.

    I was saving funds for the test because it's a little bit pricey especially we have lots of expenses since i gave birth and a month after. ( My baby was confined because of sepsis :( ) By the way, i live in the Philippines.

    Yes, muscle pain/bone pain is associated in autoimmune diseases.

    I am on low dose aspirin now.

    I am a bit scared of all the things i read on the internet about autoimmune diseases. Maybe i can take APS but not Lupus.

    Thank you for the welcome!

  • Hi there and welcome, it is important that you do the three tests for Hughes Syndrome/APS They are easy and cheap for your main doctor to do. It is as safer to know, some of us only need Aspirin, although through my pregnancies, all of them I had anticoagulation prescribed. It is also important to look at your Thyroid function plus your levels of B12 D and Iron. Sorry to hear about your niece. MaryF

  • Thank you so much for the welcome and suggestions Mary! I appreciate it!

    I had my CBC test last week. Hemoglobin and RBC counts were good and the lymphocytes except for the WBC count which is a little low. It was stated that the normal value is 5.0 but mine was 4.2.

    Rheumatologist told me to have a repeat cbc after 2 months.

  • Hi and welcome.

    I agree with my colleagues.

    Dave

  • Thank you so much Dave!

  • Hi Stephy.

    You sound smart and coming on this site I believe doing the right thing😀 All I can add is stay calm check out anything you are worried about. No harm in asking. There is no reason why you have to follow your cousin. As long as you know the issues you will find your level. I think not knowing you have these things leads to disaster. Get the best doctors you can. Don't believe everything but keep a real open mind do lots of research which is free these days. Do things that keep you healthy. Enjoy your life.....

    Keep us posted

  • Thank you so much Linda! I appreciate it very much.

    Right now things are running into my head. I am scared of Lupus than APS.

    I think i have this anxiety and i think that all the things i read articles about lupus and it scares me so much!

    Thank you!

  • Leg pain can be a sign of a DVT – which is medical speak for a clot in one of the veins in the leg. I had several DVTs back in the day before I was diagnosed and put on warfarin.

    My father was a doctor who lived several hundred miles away from me. He asked me to do the following test when I was speaking on the phone with him about my leg pain:

    Sit down in a chair. Extend the unaffected leg so that the knee is straight. Now, keeping the knee straight, pull the toes back as far as you can until they are pointing straight up or toward your face. Note what that feels like. Now do the same thing with the leg that has the pain. Does the pain feel substantially different? If it does, this may indicate a DVT. That day on the phone when I did the test, I actually could feel something moving inside the affected leg. My father called a colleague and friend of his who was a cardiac surgeon; he also called my husband at work and told him to pick me up and take me to see that surgeon; and he called his ex-wife – who he had not spoken with for 20 years – and told her to come over and look after the children so I could go to a very important doctors appointment. And yes, that surgeon concluded I did have a DVT. I was put on blood thinners until the clot dissolved. I was not diagnosed with APLS at that time as this happened in 1986 -- about the same time. Dr. Hughes first described this syndrome.

    But do note that this "stretch the leg test " is not always conclusive. But if you do suspect a DVT, you should be seen by a doctor. The threat is that the clot could come loose and float around until it reaches your lungs where it can cause a pulmonary embolus. And you don't want that to happen.

  • Hi,

    Please follow the advice Mary gave you about tests etc. She knows this illness since a lot of years.

    Here are the 3 antibodies you shall take twice with 12 weeks apart;

    1) Anticardiolipin antibodies (aCL)

    2) Lupus Anticoagulant (LA)

    3) Anti-beta2-glycoprotein-1 (anti-B2GP1)

    As to the second and most important thing: Get a Specialist who is specialized in Autoimmun illnesses like Lupus, APS, Sjögrens, Thyroidea also etc. Very very few Rheumatologists are Specialists of this illness even if it is a rheumatological illness. It was found in 1983 so rather new actually.

    Lupus is another illness and not HS/APS.

    Lupus Anticoagulant is one of the antibodies you take for a diagnose of HS/APS.

    I do not know how many Specialists there are in the Philippines, but you have to see one. It can be a fight to find a Doctor for us.

    Please do not be frightened. You have got low dose of Aspirin and that is the first step to thin the blood a little. It is not an anticoagulant and works in quite another way but most of us start with this and we feel much better. Some of us need anticoagulation at once but that is what the Specialist will tell you.

    Good Luck and stay with us as we are here for you.

    Kerstin in Stockholm

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