Really need help

[Moonbug]

Hi all was just wondering if some of you could help I got diagnoised just over a year ago with aps and today I had a visit to the blood doctor well came away feeling really down we went through my results so here goes all tests negative apart from the la which apparently the normal ratio is 1.2 and mine is normally 1.3 or negative so mildly positive .my inr is 1.1 and all other test seem to be normal my rbc was a little high what do people think on this is this aps like he says or what I'm so confused any help would be great . H x

[Lesley_D]

Hi there moonbug - don't despair, can you tell me what your original symptoms were? - I have had 2 pos blood tests, and my last at St T's was neg, and I also await their comments on my appt on 1 May - however, I digress - I would say if you have the Dx of APS my guess and this is only a guess, one of 2 things you could be like many serong neg (I know I have spelt this wrong, but I am sure someone will correct me) this is where you have APS but bloods show neg. Or maybe you are not in a flare up and your bloods are behaving? - do you take warfarin? as if you do, or even if not, and you have had previous DVT or other an INR of 1.1 seems rather low to me, but, I am no doctor, my INR range is 3 - 4 but I have history of DVT and PE.

Whatever the reason, don't despair, why not visit your GP and ask if he/she can help with explanation, or phone blood doc and say you are confused and can they explain.

Sending warm smiles

Lesley

[daisyd]

Have you had any other symptoms such as a blood clotting problem

DVT, PE, Stroke TIA, still births premature baby , still birth etc

what medication are you on ,

Have you got to see him again. I would ask your gp to explain it better for you

Good luck Karenxx,

others will probably know more

[daisyd]

Sorry wrote at the same time xx

[Moonbug]

Hi thank you for your replys. Thankfully I haven't had any clots ive had a few miscarriages . It happened after I had my son which I carried to full term and was healthy I just started feeling weak all the time brain fog Aches and pain severe tiredness pins and needles and dizziness I'm sure there's more I just can't think. I haves aunt ,cousin and nan who have this . Currently I am on 75mg of aspirin. I don't have to see him again as he is leaving do you think I should see one of the docs at London bridge. Also 9 times out of ten there positive results. H x

[jessielou]

Hi moonbug

I too have conflicting blood results, in the past have tested positive on many occassions for la and ana (anti nucleur antibodies) but only once for antiphospholipid antibodies. I have had many miscarriages and dvt then pe. So do have a definite diagnosis of la positive Hughes syndrome . Then for some reason strings of negative tests, weird Hughes syndrome?!?!?!?

As others have said there is also quite a few who have sero-negative Hughes syndrome, diagnosed on clinical symptoms, quite often at London bridge by professor Hughes himself or at St Thomas's.

I hope you find answers hon. Keep asking and we'll try and help.

Take care gentle hugs love sheena xxxxx

[paddyandlin]

Moonbug do not dispear as the others above had said you can get a diagnosis from previous medical history and family history and symptoms you need to get a doc who knows APS so make a list of your symptoms and then another of your family history as this all helps when docs putting the pieces together

Paddy

[pumpkincake]

Hi Moonbug

I think there are so many variables that can be involved with test results.

First, antibodies can wax and wane...they can come and go with the wind. You can be positive at one point and negative at another. (happens with me all the time).

Second, there is seronegative APS as Lesley was talking about. Your tests results can be negative but your symptoms fall into clinical APS.

Third, although testing for antibodies is sensitive, there is still the possibility that a test may not be sensitive enough for certain people. You may have the antibody but it may not show on testing.

I was diagnosed 20 years ago. Positive all over the place. If I hadnt had APS then and was being tested now I would be negative...and not diagnosed with APS or possibly diagnosed with seronegative APS.

Lab test are so important...but when it comes down to the nitty gritty...symptoms are what we live with. I cant see these antibodies...but I feel thier affects. Treating APS/Hughes is impossible as there is not "cure" for it. Treating our symptoms is possible...and I think it is a HUGE step looking at Seronegative APS!!

Hang in there...write down questions to take to your doctor...and ask him/her. If they dont have an answer...ask them if they can get one for you.

Beverly

[MaryF Administrator]

Yes, I would echo all of the above, detailed notes in chronological order from your early years, to present, and any paperwork you already have, and perhaps trying to get stuff you have not been give or lost. Don't give up, we all know the score. Mary F x