New here

[stillwaiting]

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.

[MaryF Administrator]

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:

youtube.com/watch?v=V3J8BLk...(Not working as expected?)

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

[stillwaiting]

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

[stillwaiting]

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.

[stillwaiting]

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.