New here

Hello - this is my first visit here - I started reading last week.

I have been ill for many years - lost 2 babies at 17 weeks each nearly 20 years ago. Ten years ago I started to have stroke like symptoms - weak down right side, poor speech these have worsened over the years. I have had to teach myself how to read, write again. Following instruction as in a recipe is really difficult and I had to re-learn how to knit. My colour vision has gone at times. My neurologist says it is "stroke like symptoms cause unknown" though he has also said I may have had a "small stroke due to migraineous phenomena" All very confusing.

I saw a rheumatolgist recently who has taken loads of blood tests.

Anti B2 glycoprotein igG level was 67.

Am I right in thinking that this is now used as an indicator for Hughes? If so then I know I would have to test positive again.

I'd be interested to know your experiences of this test.

6 Replies

oldestnewest
  • Hi there and welcome: Glad you found your way on here, and it does sound as if your neurologist is trying to get to the bottom of things. These two tests are a must:

    Anticardiolipin Antibodies (aCL) and Lupus Anticoagulant (LA

    So, that is a starting point, as is showing the neurologist this film and also the website, you can probably get an email address of the secretary and send it all through addressed to him/her:

    and: hughes-syndrome.org/ The site contains a list of medical consultants/doctors with APS/Hughes knowledge.

    and for good measure a newspaper article:

    telegraph.co.uk/health/4400...

    Mary F

  • Thank you Mary . My LA test was normal. aCLis highlighted as an abnormal - Less than 0.8 MPLU/ml.

    This is why I was wondering if the glycoprotein test would hold some sway. I see the rheumatologist again at the end of the month.

    Thanks again for replying :)

  • Hello there and welcome to this site. The Anti B2 GP1 is used now as a matter of course at St Thomas when testing for APS along side the LA and aCL tests.

    You say your test was 67 but I would like to see the reference range as they seem to be different from labs across the country. This tells how positive you are.

    Yes it is true that they should repeat the tests to see if you are still positive in order to get a dx however some of us, 25% in fact, dont actually test positive at all because we have different kinds of antibodies that they dont test for but we still have APS. This is confusing but it is the tests letting us down not us failing the tests.

    A good APS specialist can confirm the dx on medical and clinical symptoms without the blood tests and indeed many of us have had to be dx like that in the end after years of suffering because some Doctors are just so obsessed with blood test results and ignore how the patient feels, what symptoms they have, if they have even had clots and insist in believing they are down to some other magical phenomenon probably all conjured up in our heads!!!

    So in answer to your question yes that test will have some clout but it is not the be all and end all of everything. If I was you I would go to the HSF website and gather as much info as I could and then make a list of all symptoms along with past history that is relevant and take it along with you to your appointment.

    Good Luck and please let us know how you get on. x

  • Thank you so much for replying. My positive 67 was against a lab range of 0.10 - 6.9 U/ml so strongly positive.

    I am very fearful that I will be fobbed off yet again.

  • Yes as you say very positive. I would think strongly about finding a APS friendly specialist that you can be referred to. A list is now on the HSF website. If your GP is stubborn and this is not possible you could perhaps save up and go to London Bridge (Prof Hughes waiting list is at least 6 months anyway) which would then give you a plan that you could take back locally for your care there and its rare that it is ignored.

  • I don't think you can ever know just what a huge help you have been to me - just reading and understanding. I feel like I'm going barmy with all this - lol! I have been told I am with a good team this time - I shall be able to tell at the end of the month when I see them again. By then I will have the appropriate time lapse for the re-test. Though I think at this stage of diagnosis APS is screamingly obvious. If not, as you say, I wrote down two APS specialists from the website you mention.

    Thank you so so much for caring enough to answer my questions.

You may also like...