No positive test for APS

HI All

I am still wondering if I do have APS or not. I am just so sick and in pain all the time, so want a diagnosis so I can get effective treatment. My doctor originally diagnosed me on my symptoms and blood test results. He did not test for APS but the results showed I did have an auto-immune condition and high igA.

I had more blood tests done 6-8 weeks ago and GP said that the rheumatoid factor was elevated so he referred me on to a Rheumatologist. The rheumy ordered more tests as well as x-rays and bone scans. He says I don't have RA but do have osteoarthritis in both knees and hips. He says I did not test positive for APS or any other auto immune disease although my c-reative (?) was raised.

Rheumy says I can't have treatment with anti-inflammatries for the arthritis because I am on blood thinners. He said I can't have knee surgery as I am at increased risk of blood clots (But I don't have APS?!?) He said he wasn't going to take me off blood thinners in case I have a clot. (But I don't have APS?!?) He suggests I see a Neuro physician to see if I need to stay on the blood thinners. My GP says if the rheumy has found I do not have APS, then he agrees with him.

I am so tired all the time, can hardly walk from joint pain and have a huge list of symptoms that have affected my life drastically. My doc says take panadol 3x daily and have hydrotherapy for the pain. I am in Queensland, Australia, 1000's of kilometers from an APS specialist; i think 1 is in Melbourne & 1 in Sydney. Do I need a referral in order to see a specialist to see if I am sero-negative APS? I am getting desperate.

History:

migraine for 35 years

miscarriage

pregnancy with pre-eclampsia

TIA resulting in emergency c section for above pregnancy with live birth

miscarriage

pregnancy with pre-eclampsia, with live birth

TIA

2012 Aortic dissection

2015 Pulmonary Embolisms

livedo reticularis (comes and goes)

seizures

TIA

black outs

TIA

blurred vision and no night vision - tests reveal damage to my retinas

diagnosed neuropathy

diagnosed sleep apnea

diagnosed fibromyalgia

"excessive sweating, chronic fatigue, brain fog and I stumble a lot and drop and break things - all new since 2015."

Thank you all for the great work you all do on this site. I try and read the posts most days.

Di.

6 Replies

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  • Hi, if I were you I would go and see the nearest specialist or see if you could take a holiday which is centred around an appointment to see them due to the distance. I was seronegative for years before I passed tests, please do not despair and make sure you take your medical history in these useful bullet points with you. MaryF

  • Thanks Mary :)

  • I agree with Mary! You need help with your diagnoses and a proper treatment . I have read that Livedo Reticularis is a sign of APS. I had it also before I was anticoagulated from time to time.

    Kerstin

  • What anticoagulations are you on? If it is Warfarin what therapeutic level do you have?

    Have you read "Sticky Blood Explained" by Kay Thackray. She writes about the different symptoms that you may have.

    As Mary says so many have sero-negative APS so do not give up. Follow her advice.

    Kerstin in Stockholm

  • Hey, you seem to have a lot of the illnesses that I have. I have read that sleep apnea can lead to Fibromyalgia, because when we do not get adequate REM sleep, our body suffers. I am also in chronic pain, but mainly in my chest and leg following blood clots a few years back. I also have moderate/borderline severe sleep apnea. I wish I could wear the BIPAP mask, but it is so hard. My pressure is 24, and by the time the machine hits 20, I have to throw the darn mask off. I am sleepy every day. I have lived my life in a complete daze for many, many years. In your case, I think treating the sleep apnea will help you a lot with your pain. Also, they say that Plaquenil can help with your pain. I also want to try Plaquenil, but my doctor says it's only for patients who have SLE Lupus. I got tired of arguing with him and just gave up on the idea. What does it matter any ways, I'm already on painkillers.

    Is there any way for you to get a copy of your medical record to see what your test results are? Sometimes they forget to test for certain antibodies. I am negative for the most commonly tested for APS antibody (the Anticardioliphin antibodies). But I am an extremely high positive for the less commonly tested for antibody (the Anti-Beta 2 Glycoprotein antibodies). There are some other antibodies like the Lupus Anticoagulant that they can test you for. With your history of Firtility and mini-stroke, you can even be seronegative. That is when you have all of the symptoms of the disease, but they don't show up on any blood tests. You most definitely have something going on with your autoimmune system based on the CRP and RA factor.

  • How big is your aortic dissection? I also have borderline aortic aneurysm. That is pretty scary. I'm glad you're alright. I need to get my vision re-checked. I was diagnosed with 20/100 vision in my left eye 10 years ago. The doctor kept on asking me if I ever had mechanical trauma to the eye. I never thought it could have been caused by thick blood.

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