APS

[TheJedMan]

Suffering from APS since 1982. I'm always interested in this autoimmune problem. New technologies on treatments, stuff like that, plus others n their stories.

[Manofmendip]

Hi and welcome.

I notice that you have just joined our forum.

I am interested that you have been diagnosed with APS since as far back as 1982. How were you diagnosed and by whom, back in those day?

It helps us and other members to help you, if you tell us where yo are from.

Dave

[HollyHeski Administrator]

Hello, you have as intrigued, what symptoms did you have for your early diagnoses?

My heamatologist found I had the disease in 1985 ish but I wasnt diagnosed until 2006!

Tell us more about your story....

[TheJedMan in reply to HollyHeski]

At first they thought I had Anti-Anthrombin 111 deficiency I was told in 2006 it was APS because I kept getting clots. Now early 80's I was in Canadian Military they had no idea what was going on till I was sent back to Hamilton Ontario before it started to become clearer.

[HollyHeski Administrator]

Simiiar story to a lot of us here, welcome, we gain a lot of help and support here, just sharing our knowledge and experiences.

How is your health now, are you on warfarin?

[MaryF Administrator]

Welcome, many on here had years and years to wait before the right diagnosis, myself included, such a relief to have it and the right medical care. Lots of information on here comes from the individual members as well as the medical advice and guidelines given by having the right doctors involved. MaryF

[Lure2]

Hi Thejedman,

We sometimes do not know when the first symptoms begin. It can be at or after an operation or a small clot not noticed as a clot.

The most important thing when you get a diagnose is to have a Specialist of autoimmun illnesses who has treated patients before and know the symptoms.

There are other autoimmun illnesses (Sjögrens, Thyroidosis for ex) that may come later or already be there undiagnosed. Important to know and distinguish between them for the Doctor to be able to give the right treatment.

It is a rheumatological illness but also a blood-disorder. Common with a Rheumatologist or a Hematologist to be specialized on HS/APS.

Another important thing is to be anticoagulated. Are you properly anticoagulated?

Best wishes from Kerstin in Stockholm

[GinaD]

My first symptoms? Thats a tough one for me. I developed my first disgnosed clot in my leg in 1988. But in hind sight, I was having minor symptoms since childhood. I particularly remember that in my rough and tumble childhood I interpreted my tendency to bleed very little as a sign that I was 'tougher' the other kids. And the tinnitis started when I was 7 and has bever stopped since.

[charlieab in reply to GinaD]

Tinnitus since 7 made me stop and think. Sounds like you were tougher than the other kids.

[Lure2]

Are you anticoagulated?

Kerstin