Sticky Blood-Hughes Syndrome Support
8,432 members8,588 posts

Completely lost with my APS and what to do next ?

Completely lost with my APS and what to do next ?

Hi all .. am a new member .. was diagnosed at age 22 with APS after a lung clot . Was living away so when I moved home I never had any follow up .. the past two years I have had the worst headaches , memory issues . 2 mri later and thu found multi focal lesions .. still no treatment .. trying to find a doctor who can help .. honestly at the moment I could cry .. I have three kids (one with severe mental health issues ) I feel like my brain is letting me down and for the past two weeks I’m so tired and my joints hurt so much .. I’m sorry I just feel like I’m always saying I feel unwell and people think I’m a hypochondriac...

it’s been very helpful to read your posts and know it’s not all in my head as such lol .. I guess I just needed to put this all down in a post ..

I’m in Dublin and would be very appreciative of any support or groups that anyone might know off ?

Thank you for taking the time to read this :) x

Ps I picked the silliest profile pic as it makes me laugh - so not a vain selfie individual 😆

17 Replies
oldestnewest

I am so sorry reading your story, however, you don't need sympathy: you need a good doctor. The system has failed you badly. If you have a helpful GP, go and ask for a recommendation.

There is a pinned post here on specialists which has been put together and I hope this will help you.

I came across an article from 2006 mentioning Dr Karen Murphy, consultant haematologist at St Vincent's Hospital in Dublin. The article is here: irishtimes.com/news/health/...

I hope she is still there or the hospital can recommend a specialist.

With good wishes,

Ros

1 like
Reply

Thank you Ros.. apologies it was a bit of a self indulgent moment earlier .. getting my bloods together and going to see my GP and will follow up with that recommendation.. thank you for the article also .. will have a read after work ..

Linda 😊

Reply

Never feel you need to apologise! This is not self-indulgent! This is looking after yourself - if you cannot look after yourself, you cannot look after your three children.

Looking after children is exhausting. Looking after a child with mental health problems as well, must be very difficult and I am concerned whether you are getting the support you need.

I don't want to pry, but if you would like to talk, please PM me.

With good wishes,

Ros

1 like
Reply

Thank you ros .. o think stress has played a big part in my health being poor especially the last year ..

myself and my partner are living apart and co parenting but yes it’s a lot with kids and work ..

it just seems odd that after no major events that in the past year I have had ms type symptoms and recently awful joint pain and some fevers ..

it’s great t👍 have a forum to learn more about this and be supported so I thank you very sincerely for your messages ..

I will contact that doctor in st vincents hospital . I was meant to see her in sept when I was in for gallbladder surgery but they sent a supposed bloods specialist who knew nothing about APS and wasn’t anyway understanding or helpful .

Thank you again Ros :)

1 like
Reply

Hey welcome to the forum, inn new to it myself. It has already been life changing.

I know all to well the feeling of always being unwell.. take the time to read the posts here, it helps understand everything and shows you're not alone and what you're going through is completely normal and not inside your head!

Props to you for dealing with everything you have and looking after three kids. That must be incredibly difficult.

Stay strong, eventually you will learn what triggers make it worse and how to deal with everything when you're at your lowest. Sending you some positive vibes.

Good luck finding someone in Dublin to help you out 😁

Reply

Thank you for your message .. it’s really nice to get such positive advice and understanding .. i guess like most people here you can start to feel like people just think your always saying your unwell and they don’t get how bad you can feel each day with different things ..

hopefully I will get somewhere with the hematomalogist that Ros recommended ..

thank you for your message :)

Getting time and remembering to reply to messages is also a memory issue

Reply

Hi

Thank you for your message .. again it’s so lovely to have such friendly and supportive messages and advice ..

I have been getting very down about feeling like I’m struggling to be a mum , work and just have energy to function .. I know that’s a pretty common feeling when you have a chronic illness but it’s nice to feel like your not alone ..

I think I’m learning that stress and lack of sleep are what’s plummeted my health in the past year .. I’m still learning how to manage that and take time to finally get myself help so I’m okay for my kids . Like most parents your own health generally takes a back seat - and that’s fine because we love our children but it’s understanding that putting ourselves first isn’t be selfish - it’s just caring for our own health so we can function and be okay ..

thank you for your post .. it means a lot at this time to have support :)

Kind regards

Linda

Reply

It can be so demeaning and frustrating trying to communicate with healthy people about what its like to have a chronic disease! I recommend a book, “In the Kingdom of the “Sick” although a shorter, funnier summary of our communication challenges can be read here: butyoudontlooksick.com/arti...

Reply

Thank you Gina .. I guess it’s just I see it on friends faces when I’m saying I’m tired , have headaches / sore joints and can’t follow through on plans ..and that’s when I remember lol ..

Thank you . I will have a look at that book .. your very kind to message :)

Kind regards

Linda

Reply

Thank you for that link Gina .. it was really good and was very relatable .. it made me think about how I was looking at someone in work rushing around and was just thinking what’s it like to have that much energy ..

it’s a good point to note for ourself s that we can’t do everything and that’s okay .. I think we just push too much and then stress and exhaustion just makes it so we can’t get anything done ..

Thank you for the link again .. :)

Reply

Most importantly, make sure you obtain a specialist in APS aka Hughes Syndrome. Settle for nothing less. Don't stop looking until you find that doctor. A quick way to find out if they have the knowledge is to ask them if you can have aps and still test negative. The answer is yes.

Best wishes and Blue Skies to you!

1 like
Reply

Hi

Thank you for your message .. have managed to get few blood results together from my surgery in sept .. going to go for bloods Monday and app Tuesday .. he said he could prescribe aspirin and something for the joint pain .. and will follow up in a few weeks with a new hematologist ..

I have been told that by many doctors that once my bloods were fine that it meant I no longer have it .. 🙄 .. honestly have been greatly dismissed over the years here as a ‘your fine ‘ approach ..

it’s really comforting to speak to others and realise that these are real symptoms and that there is something to help with it all ..

I appreciate your message ... thanks :)

Reply

Welcome - I was taking cod liver oil long before I was diagnosed with APS and have never stopped so don’t suffer from sore joints as much as I probably would if I didn’t take it. My memory is terrible and that is one symptom that frightens me the most.

Currently nursing a sore back (sciatica); not sure if it’s related to APS (does anyone else suffer?). It was so bad I got my son to call ambulance as I was scared to move because of the pain when my back spasmed.

I sometimes feel that I am getting off lightly based on other posts I’ve read but when I get a 72-hour headache, it is very depressing but I can now accept that it’s an APS flare up. I’ve been given Co-codemol for the back pain so might keep some back for the headaches!

I don’t see any specialist at all; I’m basically left to get on with it. As long as I keep taking my medication and my symptoms don’t get any worse, I’ll just carry on.

Caroline (Aberdeen).

Reply

Hi Caroline,

I am not sure if you have an Specialist for your APS and if you take anticoagulation or Baby-Aspirin?

If not you should look for a Specialist promptly.

Best wishes from Kerstin in Stockholm

Reply

I don’t see anyone at all - I’m on Rivaroxiban and no longer monitored. Even when I pick up my repeat prescription from the chemist, they don’t ask if my blood is checked regularly (they did when I was on warfarin). Maybe it’s an NHS thing.

Reply

Hi Caroline again,

I am a bit worried for you as you have had lung-clots and some other symptoms from APS probably.

You should really try to find a Specialist of autoimmun illnesses as you are still young with children and must probably be better anticoagulated than with the Rivaroxaban. It is only approved for an iNR up to 3.0. I need an INR of 4.0.

A Specialist is a Doctor who has had patients like you before with our illness and also knows about other autoimmun illnesses. Sometimes we can have Sjögrens or SLE (Lupus) and Thyroid-issues. They go hand in hand sometimes like some sort of "cousins".

I have been on our site for several years and most of us need that Specialist and the best thing is to find him as soon as possible. It is also good that you have been diagnosed already as some of us go several years clotting (we can have micro-clots that are not seen on a Scan) and not treated.

Try to read about our illness. You could try to find "Sticky Blood Explained" by Kay Thackray. She has APS and it is a good book to understand how it is to live with our illness. Also a good read for relatives to better understand us.

Hope you try to find that Specialist. I also wonder if you have high bloodpressure as you had lung-clots? High bloodpressure (I had that before anticoagulation) should be monitored and must not be too high with our illness.

Best wishes to you from Kerstin in Stockholm

Reply

Rivaroxaban does not work like Warfarin. Warfarin must be monitored very closely as to the INR. It must be in "the therapeutic range" set by the Specialist.

I am triple positive (all the 3 antibodies positive) and with high titres and then I have difficulties to keep it in place like you had once.

I wonder if you are triplepositive? erhaps you could go back on Warfarin if you could selftest. Find that Specialist!

Kerstin

Reply

You may also like...