What is INR?

[phillygee]

how is this determined? Pardon my ignorance, I'm new here.

[phillygee]

Thanks for your response. No I'm not on blood thinners but suspect I need to be. I take a baby aspirin/day. Have had two TIAs and rheumy has been testing to see if high level of the APS goes down to determine diagnosis. That's my guess. She doesn't communicate well like I wouldn't be able to handle the truth. Missed last appts due to lack of funds. Fifty dollars a pop adds up on fixed income. My own research has brought me here. It sounds exactly like what I have in addition to sjogren's and fibro, maybe lupus.

[HollyHeski Administrator in reply to phillygee]

Hi and welcome. Is your Reumy an APS/Hughes specualist?

This is really important for us, anticoagulation is the key.

Tell us where you are and hopefully others will talk to you in your area and recommend a specialist near you.

[phillygee in reply to HollyHeski]

Thank you! I'm not sure if my rheumy is APS/Hughes specialist or not. She did discover the abnormal blood test and said that's probably the cause of the mini strokes. My problem is she doesn't talk to me but spends most of the time on the computer and about 5 min exam. I have to ask questions between the key strokes. lol I'm in Phila. PA USA

Thanks so much.

[HollyHeski Administrator in reply to phillygee]

Im in the UK and dont totally understand the US system, but getting a diagnoses is half the battle.

If you are paying for these appointments, in my opinion you have every right to ask questions and to have explanations!

Testing for APS is usually done by blood tests repeated 12 weeks apart.

They are all looking for antiphospholipid antibodies (aPL):

Anticardiolipin antibodies (aCL)

Lupus anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

Also have the blood tests MaryF suggests.

Your main question contrary to all the blood tests is - Is aspirin enough for me, to prevent any further TIAs or clotting events?

[MaryF Administrator in reply to phillygee]

You have had good answers already, welcome by the way, please be suspicious of a 'Fibro' Diagnosis, I enclose a good paper below. The trio of disease is often Hughes Syndrome/APS, Sjogrens and Thyroid, the trouble is people go along to the GP and they only do the TSH test, which I feel is not fit for purpose. I do a barrage of private thyroid testing as recommended by Thyroid uk, mine showed up with bells on, also make sure to test your B12, D and Iron.

the-rheumatologist.org/arti...

MaryF

[phillygee in reply to MaryF]

Hi MaryF and thanks for the article. Thyroid tests are always normal even though I suspect that's not the case. Vit D is low and iron is low. Haven't been B12 tested. My problem is I do my own research, present symptoms to dr and get brushed off. Nothing is more annoying! Gotta keep trying. You'd never guess how many PCP's I've been too. Any suggestions, anybody? Thanks again.

[GinaD]

Indeed, tell us where you are located. Differences in care access vary so much! If you are in the US and have health insurance, then I have found that a phone call to the insurance provider can result in better access to treatment. You see, diagnostic tests and consults plus meds are much cheaper the ER visits and hospital stays due to blood clots.

[phillygee in reply to GinaD]

Hi GinaD

I'm in Philadelphia, PA, USA. Are you saying contact the insurance provider directly and ask for what? Pardon me but I'm so beaten down trying to get the proper diagnosis. I stopped going to the ER. The pattern now seems to be a shot of torodol then sent on my merry way to suffer with the big bill. Enough of that!

[addisonwb]

I agree with some of the others, you have the right to ask questions and the right to choose a doctor who is interested in what you have, not just your symptoms. I would find a doctor who understands sjogrens et.al. and is willing to do what is necessary. I have been blessed with mine. Bill