New guy.

[Croyboy01]

Male 49 Uk. Recently diagnosed with APS

[HollyHeski Administrator]

Welcome, all a bit daunting at first, the key is to get an APS specialist, tell us where you are and hopefully we can recommend one?Stay in touch and ask away, again welcome.

[Croyboy01 in reply to HollyHeski]

I’m in Scotland, near Glasgow.

[KellyInTexas Administrator]

Strength in numbers!

[Mermaidatheart]

Welcome to the group!

[GinaD]

We're not doctors, but we share advice and coping strategies. Ask away if you have any concerns or questions.

[Lure2]

As Holly Hesky says the most important thing is to get a real Specialist of autoimmun illnesses who has great knowledge of APS. So very few Doctors know this illness and that we have too thick blood that has to be thinned.

Try to learn as much as you can about it. Stay here as you will learn a lot here. I live in Sweden but has been on this site for several years and know there are a lot of knowledable and helpful persons here.

It is good if you can tell more about yourself and especially about your typical symptoms and how you got your diagnose. Hope you allready has got a Specialist which sometimes can be very difficult and many of us have had to fight a lot to get to that man or woman.

It can be difficult for a Doctor to give a correct diagnose as many of the autoimmun illnesses go hand in hand like Sjögrens, Lupus (SLE not the Lupus Anticoagulant but the illness), Ra, Thyroidea-issues etc.

Best wishes to you

[Lure2]

I read your first question to the Lupus site here and now I understand that you do not have the illness Lupus but has been tested positive to the Lupus Anticoagulant twice. I am also positive to Lupus Anticoagulant (LA) but also to the other two tests they do. That means I am triple-positive and those patients usually need Warfarin. Are you also triple-positive?

I am on Warfarin and that drug has been my lifesaver. I had a lot of neurological symptoms (TIAs end microembolies) that eased remarcable after my blood became thinned. I need to stay at an INR of around 4.0 to be without symptoms that I can feel.

"Sticky Blood explained" by Kay Thackray is a very good book to better understand this curious illness we all have here. Kay also has this illness with neurological symptoms.

I

[Jenkine]

Hello. Lots of good advice here but learn as much as you can about your condition and take control of it. Keep as well and as fit as you can...takes a bit of accepting that you have this, at least it did me when 1st diagnosed...took me about a year to fully appreciate APS..I had 3 TIA's and to be honest really scared me..

But 15 years in...ive done ok. I record my own INR and dose my warfarin. I do this in conjunction with my GP so we both feel happy with monitoring and progress. A good Rhematology Consultant is important...I was under Proff Hughes for many years and he gave me so much confidence in managing this condition. I have a lot to thank him for.

But do what you can and live your best life.

Elaine x

[MaryF Administrator]

Welcome, hoping you have a Hughes Syndrome/APS specialist helping yourself and your GP with your care. Do feel free to ask us questions, we all learn from each other on here, which results in people not feeling so out on a limb. MaryF

[Croyboy01 in reply to MaryF]

Thanks Mary. I’m not sure what’s happening yet. Still waiting on my referral to the warfarin clinic.

[MaryF Administrator in reply to Croyboy01]

Ok, if you say roughly where you are located we as in members on here and us as Admins can probably guide you to the nearest specialist who fully understands Hughes Syndrome/APS. MaryF

[HollyHeski Administrator in reply to MaryF]

Hi Mary, Croydon is in Scotland, near Glasgow- can we recommend an APS specialist near?

[MaryF Administrator in reply to HollyHeski]

ghicworld.org/ghic-consulta... MaryF

[Croyboy01 in reply to MaryF]

Cumbernauld, north Lanarkshire.