Help understanding test results please

[julieba]

Thank you for taking the time to read my post

I was refereed to rheumatology by my GP

I had this appointment some 3 weeks ago where he thought I was showing signs that would be better seen by a neurologist and he has asked my GP to refer me on which has been done and I am waiting for this appointment.

This week I received a follow up appointment for rheumatology and another letter saying that they need to see me due to the following blood test results

Negative cardiolipin and B2GPI ,but positive Ro and Ro52

Searching the internet for this brought me to this site

Can any one tell me what these results mean please

Thank you in advance

[AmyKG]

Hi julieba,

Cardiolipin and B2GP (Beta 2 glycoproteins) are tests for antiphospholipid syndrome. The test looks for antibodies against cardiolipin and B2 glycoproteins (both found in cell walls). This is similar to lupus antibodies which attack the nucleus of cells where the DNA is kept. Ro and Ro52 I believe are for rheumatoid factor antibodies, also found in people with rheumatoid arthritis. People with anti-Ro antibodies tend to have stiff, swollen and painful joints. Hope this helps!

Do you already have a diagnosis of lupus or are the doctors still investigating? Sending well wishes. Amy x

[AmyKG in reply to AmyKG]

Negative cardiolipin and B2GP means you probably don't have antiphospholipid syndrome, however positive Ro and Ro52 mean you may have a rheumatoid disease such as arthritis but more tests will have to be done. Sorry if this didn't come across in my previous post! x

[julieba in reply to AmyKG]

Hi

Thank you for your reply

I am just going through the tests and sure there is more to come and a long road to tread yet!

[Sara_A]

I think ro antibodies are possibly to do with sjorgens but don't quote me?!

I have these with lupus and aps and the only time they have been of concern was during my pregnancies as the ro antibody can cause heart block in the baby so they have to monitor u closely x

[Sara_A]

I'm not sure about it being connected to rheumatoid arthritis I think that's just the rf (rheumatoid factor) blood test??

[julieba in reply to Sara_A]

Thank you so much for your help

Looks like I will have a round of tests to go then before I found out the root of my problems

[webar4780]

Hi

RO antibodies are indicative of sjogrens syndrome.

Google BSSA (British Sjogrens Syndrome Association). Very helpful organisation. You can phone helpline and talk to nurses who will answer questions and offer support.

Good luck. A x

[julieba in reply to webar4780]

Thank you for your help

I have had a look and will be very interested to see what happens when I go back to them in 3 weeks time.

I seem to have gone from spending many years being told I have anxiety disorder,IBS, tendonapathy,none cardiac pain,menopause,never being able to go out in the sun and even a hot bath causing me problems and various things.

Now after a very scary episode 4 moths ago of not being able to walk or use my hands and arms,with a lot of pain and stiffness it seems I may have a problem that ties all of these years of strange things together

I have never heard of lupus or sjogrens syndrome so am a little worried about what that will mean but would be nice to know what is going on

[webar4780]

Hi julieba,

We know how frustrating, and, at times, alarming, the waiting for diagnosis and support can be. I am sorry that you have been struggling.

I just wanted to reassure you that I did have an experience as you describe. Yes, it was very scary for me too. I was so immobile, and so very unwell, that our bed was brought downstairs for two week period. My husband really did become my carer for a few weeks. I could not stand in the shower, wash my hair alone, or even walk upstairs. I spent many months rehabilitating.

Although I will never forget that frightening episode, I can say, it helped me fight for a diagnosis, and to learn to manage my condition. That episode, ironically, is so often my driving force to chase blood results, book medical appointments, eat well, read, and gain support. I never want that horrible experience again.

Good luck with your journey, know that you are not o alone. Fight your corner and get the help, support, plus knowledge you need. These will give you the strong foundation on which to manage your symptoms better.

Read around autoimmune disease, knowledge is power. What we understand does not have the same fear.

[julieba in reply to webar4780]

Thank you so much for your helpful words and kind wishes.

Looks like I have a way to go but will keep posting as I find out more.

[driven]

Good luck Julie.