Wondering if this is my problem

I have suffered with unusual migraine with aura for several years, and out of the blue had a small stroke at age 48. Drs were perplexed as BP, cholesterol etc were perfect. Over the last year have felt very unnwell with continuous migraines, dizziness and a feeling that there is something wrong with my circulation. Someone mentioned sticky blood and I read this forum and would like to discuss with the Dr. What test do you have to ask for to see if this is my problem?? Thanks for any assistance

[Manofmendip]

Hi

These are the three tests to ask for. They should be repeated a second time after twelve weeks and two positive tests, twelve weeks apart is a diagnosis of APS/Hughes Syndrome.

Anticardiolipin antibodies (aCL)

Lupus anticoagulant (LA)

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

Where are you located?

Some people can test negative but still be diagnosed with Seronegative APS/Hughes Syndrome by clinical symptoms. New tests may be developed, which will give positive results in Seronegative APS patients.

Dave

[Hidden in reply to Manofmendip]

Thanks Dave. I will get onto this this week. I thought I repied to this saying that I am from New Zealand, but can't seem to see my reply anywhere. Just inding my way around the site now.

[jetjetjet]

Yes I agree with Dave and also you can go onto this site main page and look up what would help you with this and copy and take to the Dr. with you as some Dr's just don't know and need a little help . and be persistent if needed.you will find most all your symptoms listed there , abd even more things.check into that and tell us what you think - C & J

[Hidden in reply to jetjetjet]

Thanks for your advice

[MaryF Administrator]

HI, a late reply from me, yes you should be tested, with the tests Dave suggested, do them at the hospitals as the samples taken are time sensitive. Welcome by the way, plenty of support and advice on here, we all learn so much from reading each others posts. MaryF

[Hidden]

Thankyou Mary. I really appreciate your advice

[Lure2]

When you had your stroke did they not take the bloodtests for antibodies to diagnose Hughes Syndrome at the hospital (those Dave have mentioned above) ? You say you were 48 years old, when was it?

Did they suggest that you could test with Baby-Aspirin? You could read a book by Kay Thackray called "Sticky Blood Explained". She has got Hughes Syndrome/APS and writes about the different symptoms of our illness. Good also for relatives to understand how it is to live with this illness.

When I had my first TIAs here in Stockholm (I am triplepositive with high titres since 2002) I took 75 - 100 mg of BabyAspirin and was better for some time but had to start Warfarin (Coumadin) later as my symptoms did not go away any longer. After Warfarin I have been ok as to the neurological symptoms you can read about in Kays book also.

Best wishes from Kerstin in Stockholm

[Hidden]

Hi Kerstin,

Thanks for your reply and interesting information about the Kay Thackray's book.

I am 56 now, so that was 8 years ago that I had the stroke. There was alot of discussion about whether to put me on warfarin, but I have been on 100 mgs of aspirin ever since.

That is a very interesting question about whether I had the bloodtests for antibodies to diagnose Hughes Syndrome at the hospital. The report from the hospital stay says that a thrombophilia screen was normal. I also had a transoesophageal echocardiogram that showed a 3.5mm PFO.

I'm not sure if the thrombophilia screening is similar to the Hughes Syndome screening as I am just getting my head around this new discovery?

Thanks again and Best wishes to you from New Zealand

Helen

[Hidden]

Just an update from me: I had the tests and they were all negative. It seems that Hughes Syndrome is not well known here amongst the medical profession, but my GP did arrange for the testing to be done. I do appreciate all your assistance

Kind regards

[Lure2 in reply to Hidden]

Hi again,

Have you ever had positive antibodies done? Were they done without your knowing it perhaps? Could you search for them? You know some are diagnosed on antibodies and some on symptoms and relatives with same symptoms

Have you any relatives who have got similar symptoms like stroke and migraine with Auras like you have?

You know that many members have negative antibodies but still have the illness. Also do you remember if you were feeling better on 100 mg of Aspirin? I think you should still take them.

I had neurological symptoms and TIAs and got Aspirin, was better for a while but worse and had to have Warfarin.

Do you think that your Doctor would agree to let you have a trial of LMW Heparin to see if you feel better? Prof Hughes always says: listen to the patient! But unfortunately he is not in New Sealand.

Kerstin

[peleni]

Thanks for the interest and questions Kerstin,

I have checked and had two tests after the stroke ad they were negative.

My father did have a stroke at 75, but noone in my family has migraine at all !

I was diagnosed with a 3.3mm PFO at the time of stroke, and there was alot of debate between the cardiologist and neurologist about closing it, but they didn't.

I have been on 100mgs of aspirin since the time of the stroke in 2009. I could suggest Heparin to the Dr, but I recall at the time of stroke the neurologist thought warfarin was "overkill" for me

Thanks for getting back to me

Helen

[Lure2 in reply to peleni]

The Neurologists are not always the best to understand our very thick and sticky blood. We know that here.

If I were in your shoes I would ask for a trial of LMW Heparin and also a Echocardiography with doppler on your heart and lung. Hope you do not have high bloodpressure.

I have done 6 or7 Echos as I have got Pulmonary Hypertension and leaking heartvalves and that has to do with my HS/APS and probably micro-emboli.

For me Warfarin is not "overkill" but without it I would have been killed by now. This is a tricky illness that can hide for some time under microemboli and negative antibodies etc so I hope for your own good that you take it seriously even if you are negative at present. The trouble is that so very few Doctors understand our illness.

We must be stubborn and have own knowledge!!

Kerstin