Lupus Anticoagulant query- part 4

[Chris1802p]

Hi All- just to update you following my previous posts (if you can be bothered to look back through them )

My specialist at London Bridge had requested a brain MRI in view of my headaches and previous positive LA. My current LA had come back negative, after previously having 2 positives 7 weeks apart. The brain MRI did not show up any white matter changes (other than two tiny ones appropriate for my age), but it did show an area of cortical dysplasia which she felt was not related, and she referred me to a neurologist for that. It is a taylor type 2 lesion normally associated with epilepsy. I haven't had any seizures that I know of, although I am slightly concerned about sleep related epilepsy (need to ask the neurologist about that), and I have also recently been diagnosed with mild sleep apnoea.

Anyway, back to the auto-immune! I had a good response to the two week trial of steroids, so in view of my symptoms, steroid response, and previous positive antibodies, I have now been prescribed hydroxychloroquine. I've been taking it for a month- no difference yet but she did explain it normally takes 3 months to start working.

I don't have a specific diagnosis, but the specialist does agree that there is an auto-immune disorder going on. I'll be seeing her again in a couple of months. But I am still in limbo land really, with no proper diagnosis its very difficult for other people to understand why I feel shit most of the time.

Ah well. I'll update if anything interesting happens.

[MaryF Administrator]

I hope when you go back for your next appointment maybe some joining of the dots will have been done, in the meantime I found this for you: onlinelibrary.wiley.com/doi... Make sure you are also tested for Hashimotos which often seems to go with Hughes Syndrome/APS and other autoimmune diseases. Have you any Hughes Syndrome/APS in your family members past or present? As sometimes that can be clue. A lot of us had to go through many appointments with strange symptoms here and there before we got a full diagnosis, I know I did. Let us know how you get along on the new drug, my daughter has done well on Plaquenil, but I can't tolerate it, so take something else. MaryF

[Chris1802p in reply to MaryF]

Thankyou Mary that’s really helpful. No, there are no diagnosed autoimmune diseases in the family- plenty of symptoms and medical conditions but they don’t go to the doctors much and as we all know, if you don’t push and push you seem to get fobbed off at every turn!