APS or over thinking

[RebeccaAnn22]

Hello,

I am new to this forum and i am looking for some advice and answers really.

My mother was diagnosed with APS about 20years ago.

Both my sister and I 24 and 22 are now of an age where we understand the illness and we have been getting tested every two years since we turned 16.

Recently after finding this forum I have linked up a couple of what i though were day to day issues to something that may show im suffering with APS.

I was diagnosed with Migraines at 17 and have been put on Propanalol and Ponstan to control these, also whilst it didnt bother me at the time,I suffer from irregular periods and anemaia also and I also have a reoccuring rash that appears on my hand and legs that is purple in colour and 'road map' like. This only appears when I have been standing for more than 20mins in one position without shifting my weight and it isnt itchy just just irritating (like i need to rub them to releave a pressure) the rash and feeling goes when i sit down. All of these symptoms have been on going for the past 5 years at least.

I recently went and got tested agian and highlighted these things to my family doctor who was very understanding. He tested me and the results came back negative however he asked the specalist to check them over (were they 100% negative?) He explained to me that getting a positive result from blood tests alone is difficult, they usually look for the bloods to be positive plus a DVT and or issues with conceiving - as im only 22, I dont want to find out when im ready to have a family that I am actually positive.

He asked for me to send a picture of the rash when it appeared which i did and he said that he hadnt seen anything like it before and that it was clear it isnt an allergy or irritant, it suggests there is something not right with the circulation of blood so has refered me onto the specalist.

Im just wondering if there is anyone else out there that has APS in their family that are also in the same boat as me, and are my symptoms something that does point towards APS or if ive over thought the situation.

Thanks in advance for any advice/answers

Rebecca

[MaryF Administrator]

Hi, firstly welcome, and well done with your GP, you have a very good one there, some people with Hughes Syndrome/APS take a while to pass the tests, I did for instance and still go in and out of negative and positive testing. People with our condition do sometimes have Raynauds which can cause discolouration, however one very distinctive feature is Livedo Reticularis! As you can see in the symptoms I enclose, this is mentioned, in some people it is very livid in appearance and in others it is more faint. Not everybody has this!

The disease can run in family and yes it is important to keep an eye on our daughters! My daughter has this plus Lupus, rather like myself.

Presumably the doctor has done all three of these tests, and more are being developed to be more sensitive!

Here is the charity link, you may want to email your GP, (using secretary's email address marked for them, with these links. hughes-syndrome.org/

hughes-syndrome.org/about-h...

also list of specialists: hughes-syndrome.org/self-he...

I often recommend to members on here that they photograph new or transient things for the doctor as we all know how they go away the minute you book an appointment. MaryF

[Manofmendip in reply to MaryF]

Hi and welcome

I agree with what my colleague, Mary, has said and advised you.

Keep us informed how things go for you.

Best wishes.

Dave

[RebeccaAnn22 in reply to MaryF]

Thanks for getting back to me, I've been reading up on Sero Positive and Negative and i dont know whether or not im more in amoungst this rather than a full diagnosis.

After looking at the rash from Livedo Reticularis that is exactly how mine looks. Hopefully the specialist can give me some answers and an idication as to what's next if anything.

[MaryF Administrator in reply to RebeccaAnn22]

Hi it is the same thing, as Professor Hughes himself says it is not the patients failing the tests, but the test failing the patients. That rash is a real indicator, do photograph it for GP, and encourage your relatives to use this forum also if they need to, all the best to you. MaryF

[Lyndsaylou]

Are you taking any contraceptives? The pill? If so please talk to your GP about the risks.

[RebeccaAnn22 in reply to Lyndsaylou]

Hi Lyndsaylou, my gp has just changed my contraception now on a progesterone only pill- I have noticed my migraines aren't so bad but it is still early days

[CormorantWatcher]

I was told that my girls (now only 7 & 6) would need to be aware before starting a family, to be tested, as I have APS and it could be hereditary...

[Beartje]

Hi Rebecca, I'm not your age, but I do recognize a lot of your symptoms (I'm LA (Lupus Anticoagulant) positive): the livedo reticularis (since I was a child, on my legs, sometimes it's very clear, and sometimes it's nearly gone, it seems to vary all the time, not quite sure what the triggers are), headaches during my teens, migraines in my twenties (started at about 21 years old), irregular periods (funny enough, they put me on the pill at 14 years old, to regulate my periods, because I was getting an iron shortage because the periods came two weeks apart at some point, later in my mid thirties when I stopped taking the pill I was still fairly irregular, and now after they discovered I have APS I'm not allowed to take or use any contraception products that contain hormones). My mother has skin lupus, she does not want to get tested for APS, so not sure if she has it. Good you're on top of this for yourself. It would have been handy if I had known I had APS before I got pregnant.

[Lure2 in reply to Beartje]

A good book by Kay Thackray is "Sticky Blood Explained". She has APS herself and writes about the different symptoms of this rare illness. It could also be good for your mother to read to learn what sort of illness you have and how it is to live with APS.

Best wishes to you from Kerstin in Stockholm

[Beartje in reply to Lure2]

Thank you Kerstin.

[Lyndsaylou]

Please tell me you are not a smoker, and if you are STOP!!!!!!!!!!!!!!!!

I had my first stroke at 29yrs! For the love of yourself if you are a smoker QUIT!!!!!!!!!!

With love

Lyndsaylou

[RebeccaAnn22 in reply to Lyndsaylou]

Not a smoker thankfully lyndsaylou, my mum who's had aps for 20+ years used to but stopped when diagnosed. Anything else I should avoid? Thanks for all your help

[Lyndsaylou]

Your welcome.