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.