Help!

[DebsT]

Hi I have had a diagnosis of APS for over 10 years. Can anyone explain why I recently tested negative for APL antibodies but positive for IGM -121? I don’t understand and I am not due to speak to my consultant for three weeks.

Thanks.

[HollyHeski Administrator]

Hi, wait until you see your consultant? We are not medical advisors, we share and support with our experiences, these blood tests can go in and out of range and it needs a specialist to interpret and look at the whole picture.I list questions as I think of them so that by the time I see my consultant I have them ready and that way I don't forget anything and make good use of their time.

[Frodo]

I was told by a consultant that antibodies come and go and levels rise and fall and this is not related to having the condition or how bad it is. Also that autoimmune diseases have flares, and times when less active. That's all I know.

[DebsT in reply to Frodo]

Thanks 👍🏼👍🏼

[GinaD]

I was once triple positive. After I discovered I had gluten sensitivity and went gluten free, all my APS markers fell to what one hematologist called " boring." I still take warfarin, though based on my symptoms I remain healthy with an INR of under 2. Whats going on? I dont know, but as long as those pre-diagnosis and treatment symptoms from 20 years ago stay gone, I'm happy.

[DebsT]

Glad you are doing well! ❤️❤️

[Vespa1]

My husband has been told his no longer got APS due to. Later test results. We ignored them knowing that it fluctuates just carry on as if you have APS you yourself know from signs and symptoms it fluctuates.

[Star13]

I was recently told by one Consultant that as my antibodies and inflammatory markers were all "quite normal" if he was looking at me for the first time hed be inclined to diagnose Fibromyalgia! I resisted the urge to say that I wasn't aware that Fibro caused VTE's and Strokes! he then went through my list of diagnosis's, after each one I just said yes. He then started asking rather disbelievingly who diagnosed them so when I said the rather eminent Doctors he just raised an eyebrow, said Oh and shut up! He obviously hadn't read any of my notes, so I smiled sweetly and said have you finished, Im sure you want your lunch and left! His follow up letter didnt mention the Fibro!!