Is it really APS

[azahran]

I had a stroke or TIA one month ago. After long inspection they said it is APS. My MRI shows the new clot ands another old one. From what I read about APS it usually shows up with misscarroage. I have two healthy kids. And only one miscarriage in between and at those day they said because I was using DEPO SHOT. 

SO I AM WONDERING if it is really APS

[tim47]

Hi Azahran,

Miscarriages are but one of the occurences that can lead to a diagnosis of APS, but the fact that I am a 68 year old male with APS will tell you that it isn't a requirement. Thankfully, many women who have had miscarriages can now go full term and have healthy children.   Have a look at this link for the ways in which APS is normally diagnosed.  hughes-syndrome.org/self-he...  Come back here for any further help you might need.

Best wishes

Tim

[azahran in reply to tim47]

Thank you Tim. I will read it. 

[Manofmendip]

Hi Azahran and welcome

I agree with what Tim has told you and, like Tim whom I know personally, I am a man but 62 years old.  I have had clotting incidents and TIAs and that is why I was tested and diagnosed with APS.

May I ask you some questions that will help us Admins and our members to help you?

Where are you from?

Who is managing your APS treatment?

Are you on any anticoagulant medication?

Best wishes.

Dave

[azahran in reply to Manofmendip]

Hello Manofmendip

I am from Egypt. I am 45 years old   a reuhmotologist in Cairo is treating me. He gave me a warfarin it is called here matevan. 5mg a day. And also plaque nil 200. He said this last drug is for preventing spa to become lupus. Also he said one is to be watched till I reach 2. Right now I am 1.48 after one week of use before treatment it was 1.1. 

Thanks a lot for your concern. 

[Manofmendip in reply to azahran]

Hi.

As Kerstin has said, APS patients often need to have an INR of between 3.5 & 4.0 to have good symptomatic control.

Best wishes.

Dave

[azahran in reply to Manofmendip]

Thank you Dave. I will talk with my doctor. 

My name is Alyaa. I am reaaly happy to be a member of your group. 

[Manofmendip in reply to azahran]

That's good Alyaa, you are very welcome here and I hope you make some good friends.

[Lure2]

Hi Azahran,

I am 72, have APS, from Sweden and have two healty girls without any misscarriages. My APS came later or my type of APS did not involve miscarriages. This is a rather new illness (found by Prof Graham Huges 30 years ago). We have very thick blood and need a higher INR than "normal persons"  on Warfarin.  All of us three who have answered you now have an INR around 3.5 or a bit higher and have selftested.

So try to find a Doctor who really knows APS (a Specialist) and ask to have an INR over 3.0!

Best wishes from Kerstin in Stockholm

[azahran in reply to Lure2]

Thank you Kerstin   I really appreciate it. I will tell my doctor about the is value. 

My name is Alyaa. 

[Lure2 in reply to azahran]

Hi Alayaa and welcome to this friendly site! Please let us hear more how it goes for you.

I do not know if you have this book about APS in Egypt. It is written by Kay Thackray who has APS herself and she writes about the different symptoms and how it is to live with this illness. Good also for relatives to understand our situation perhaps. It is called "Sticky Blood Explained".

Kerstin

[azahran in reply to Lure2]

Hello Keristin

I will search for it first here if it is not here . I could ask one of my friends to bring it from the states. She is currently there in a statistics conference. 

I really want to let my friends and relatives know about it. Since they are saying just forget it and live normal. They tell me it is nothing and I should not even take any precaution But honestly. I do not feel that I should forget it   since some days I am really super and some othervdaus I am really exhausted. only my husband understands it and is supportive.  

Thank you very much again for your kind support

Alyaa

[Lure2 in reply to azahran]

Hi Alyaa,

If you can not find the book. I see that it is also available through amazon.co.uk

It is from 2003 so the latest oral drogs are not there but we have the same symptoms. There are also a lot of other books and there is a second book from Kay but I prefer the first one. 

Kerstin

[azahran in reply to Lure2]

Hello Kerstin

Than you very much for your kind support I will get it.  

Again I appreciate your help. 

[Yllek]

Completely agree a high INR is definitely needed in a lot of cases! I was very poorly with symptoms and as soon as I got Over 3 I felt better. My target is 3-4 and I'm currently at 3.2 with only minor symptoms. 

welcome to the forum X 

[azahran in reply to Yllek]

Thank you very much yelllek. I really appreciate all the information and support I have here. 

Happy to be with you all 

[GinaD]

 Regarding the difficulty of communicating with other people about this illness: I am fond of recommending a book entitled "in the kingdom of the sick."   The book points out that the diagnosis of persistent chronic disease is a new development human society.   Many people believe that if you do not have the obvious and rapidly progressing signs of an acute illness that there must not be anything "really" wrong with you.  We live in the kingdom of the sick and we must pay taxes and offer homage to our illnesses --behaviors which people in the kingdom of the well can not relate to at all!   Reading this book gave me perspective that helps me communicate with the casual acquaintances and friends who do not see or appreciate the dietary or activity issues I must deal with each day.   Reading this book of course does not help "Them"  understand me, but it helps me understand them. 

[azahran]

Hi Gina

Thank you for your advice.  I will search for it. 

Alyaa