Living with APS

[Evette123]

Hi. I'm glad to be a part of this family. It's feels a great place to interact with others that understand what APS is as well as challenges we face. I have read a few people's stories and have learnt so much. Also recognised some symptoms I didn't even link to APS. I look forward to interacting with you and thanks again for allowing me to be a part of this group.

[charlieab]

Im new too and dont even know yet if I have APS, scleroderma, and/ or another illness. Its the "and" in "and/or" that worries me! But should maybe find out next week when tests come back.

Anyways, good to "see" u and hope u doing OK atm.

[Evette123 in reply to charlieab]

Tanks Charliieab. I hope all goes well with you this week. Thanks for the welcome.

[ndstephens49]

You are so right about the symptoms I've had since childhood, especially the headaches, that I thought were 'normal' for me. Nancy

[Evette123 in reply to ndstephens49]

Yep. As I read posts I get the Ping Ping oh yeh that could be it. So many different experiences. I'm hoping I don't get anymore underlying symptoms from this APS. Sometimes I forget it's there.

[Lure2]

Hi Evette 123 and welcome to our friendly site for HS/APS!l

From which country are you and have you been diagnosed by symptoms or/and by antibodies by a Specialist who understands what our illness is about; too thick blood that has to be properly thinned to avoid symptoms.

What main symptoms do you have?

Best wishes from Kerstin in Stockholm

[Evette123 in reply to Lure2]

Hello erst in. Thanks for the welcome.

I'm from London. I was diagnosed about 9 years ago when I had a late stillborn baby.7 months. They checked my blood and realised as they were puzzled as to why the baby didn't make it.

Well it so happens I'm most affected with symptoms during pregnancy. I'm now 5w so won't be having any more. I have 3 children of my own. Thank God. I've HD early miscarriages but it wasn't linked to APS at the time. Now I know it was.

Out of the blue was diagnosed with moderate hearing loss which I believe is linked to this APS. Maybe damaged inner ear due to sticky blood affecting the fine mechanisms in our ears. It just clicked to me after seeing a fellow post here. The Lady also experienced ravioli keep change of frequency sounds.😨.

Well I'm hoping to stay positive and enjoy life as much as I can and hope there's no more bridges to cross any time soon.

I don't take any medication for APS but have been give Travel Tights and Aspirin for my upcoming trip to Cyprus. 5 hour trip. Bit scared but have received reassurance from this forum. Thanks.

[Lure2 in reply to Evette123]

Hi, I think you should start Baby-Aspirin EVERY day and take it with food perhaps for you stomach.

I have seen a Professor here in Stockholm for ear/balance-issues and he said I had micro-emboli and should start Warfarin.

I was at that time on baby-Aspirin which had helped so far to begin with. I suggest you take Baby-Aspirin as a first step and look for a Specialist as soon as possible.

With a Doctor behind you who can help you avoid further trouble you could live a perfect normal life.

Kerstin

[Evette123 in reply to Lure2]

TTanks Kirsten. The baby Aspirin makes sense in being proactive in relation to any other probable symptom of APS.

I will search for specialists in APS and just have a discussion about Keeping safe and living with APS. Just for reassurance. If it's possible to deter effects why not. Thanks for the advise.

I'm sure I saw a link to APS Specialists in London in this forum.

Tah

[Evette123 in reply to Lure2]

Hi again Kirsten. Did your Consultant link your ear issues to APS?

[Lure2]

Hi Evette,

We all have this illness on this site and to begin with we know nothing about the illness and symptoms etc etc.

The most important thing (if you have got a diagnose either by symptoms or/and positive antibodies) is to get a Specialist ( a Doctor who is specialized in autoimmun illnesses) as soon as possible to avoid damage to your body. He must know what HS/APS is; too thick blood that must be properly thinned to avoid damage to inner organs.

I talk of own experience now as this illness never go away! But it can be treated!

Kerstin

[Lure2]

At the time I met with the Professor at the ear/Balance clinic we knew I had HS/APS and I had at that time a Hematologist and a Neurologist but even if I was triple-positive every time with high titres they had never found a clot on any Scan what so ever.

The Professor said it was micro-emboli that had caused my neurological issues. They are so tiny and are not seen on a Scan of today. He is the No 1 Expert on these issues in Sweden .He said I should start Warfarin (Coumadin) which I did at once.

When i started Warfarin my neurological symptoms disappeared and that was the answer. I had micro-emboli and HS/APS and Warfarin was my treatment no 1.

HS/APS is a dangerous illness as it may hide for a long time and then suddenly explode. If we are protected at that time (when we have the stroke) we will be ok otherwise we will regret it our whole life I believe. It is a tricky illness and therefor you need an Expert of autoimmun illnesses as Sjögrens and Thyroidea-issues sometimes also go hand in hand and then it is important to have a Doctor who can distinguish between those illnesses.

The Neurologists do not usually get that it is our sticky blood that we clot from and that need to be properly and stable thinned.

Some of us get micro-clots and emboli that are not visible and for some of us the clots are visible on a Scan or MRI. We are different with different symptoms even if we have the same illness.

Some of us also get negative antibodies for a period and later on they return positive. It is important that our Doctor knows of all these issues as you can understand. Never stop anticoagulation and remember that this illness never go away.

But as I said before that if you see to it that you get an Expert and are protected with anticoagulation you can live a rather normal life. Hope I did not scare you too much now. I just want you to take it seriously that is all.

Kerstin

[Evette123 in reply to Lure2]

Hello Lure2

I've recently gotten round to getting my doctor to refer me to see an Haematologist at St. Thomas's Hospital in London. I wanted to discuss my APS diagnosis and see if they could check my health status. I had an appointment for 30/11 but record a follow up letter to say my appointment was cancelled because I had been referred to the wrong Dept. Confused I called up the Dept which confirmed that was so and I needed to get back to my doctor which I did. Now anther referral has been put in place so I now need to get another date. Feeling a little down as I'm already anxious about this illness which seems invisible but is there.

I'm just wondering you lovely educated people could list some relevant questions I need to ask the Haematologist when we meet? Thanks

[Lure2]

Hi Evette,

I am sorry to tell you but as I am from Sweden it is difficult to tell you how to manage with your APS in London.

Otherwise I wonder if you started Aspirin every day and if that helped 6 months ago?

As you have ev neurological symptoms like I had in ear, balance and eyes I think you should read "Sticky Blood Explained" by Kay Thackray. She has got APS herself and also neurological issues and describes them and other symptoms of APS very good in her book. Also good for relatives to understand how it is to live with this illness. I have it in pocket here in Stockholm.

As to the Specialist again - try to get that sort of Doctor and I think you should put a new question on our site where you tell what has happened the last 6 months and what happened with your appointment at St Thomas!

I am sorry but I do not understand why it has been like this. 6 months has pathed and you have still not seen a Specialist.

My very best wishes to you from

Kerstin in Stockholm