just want to share my story with Aps. - Hughes Syndrome A...

Hughes Syndrome APS Forum

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just want to share my story with Aps.

25 Replies

hi im new to the chat, so sorry if this is long . Hope you don't mind me telling you my story. And thank you all so much

8 years ago I suffered a stroke at 34 years old was told IgG antibodies cardiiolipin levels came back high twice was diagnosed with APS, also a hole in the heart suffered memory loss word finding and lots of other problems. 2 months before stroke I was diagnosed with peunisus anemia and inject every 3 months also low iron. Only ever seen a haematologist once who put me on clopidogril . At the time I think I was in alot of denial at what happened to me never excepted to have a stroke .it changed my whole personality i didn't realise at the time and never gave myself time to fully recover . Over time I stopped going to the stroke clinic and then I stopped taking my clopidogril as it made my periods so bad . Went back to work and struggled though with what now I know I shouldn't of done. The memory problems. Fatigue couldn't get out of bed ,the joint pain brain fog, missing words , depression, anxiety I thought I was going mad. Constantly prescribed antidepressants , in the end this cost me my job .I could no longer fully function I was clinging on to hoping some miracle would happen and it would all disappear, I became this person I no longer new . I did askmy gp about APS but she didn't really have alot of information about it so it went to the back of my mind. Fasforward to 8 years now. I started to feel unwell 12 months ago thinking my iron levels was low trying to get hold of gp at the min is hard work as for alot of people .I just wanted to get my iron levels checked with a very long wait for bloods at the min its been tough for everyone with GPS aswell . Then I though I had pulled my muscle in the back of my leg as i couldn't walk all of a sudden and the constant cramps and my foot was ice cold to the touch, took myself to the urgent care. My d dimer came back at 4 and half thousand was given an enoxaparin injection then sent to another hospital had scans and bloods . I have a very large blood clot in my main artery in my leg and I'm currently writing this story in my recovery. I'm injecting 3 times a day because in my area they have run out or can't get hold of any 120mg enoxaparen so have to use 40 mg 3 times a day , only been on the warfrin for the last week so its all new to me .still all feels unreal and made me so very thankful . I look back now and think how silly it was and not to take the condition seriously as I should of done .but then if you ask my husband he sees it all differently he thinks I've not had much help with the condition in the first place. Who knows.. and the whole healing process starts over again this time im older and wiser lol I think . Its taken me sice 9am to try and write this and its the first time I've ever really told anyone. Thank you to all the lovely people on this forum , you have gotten me through the last week . and all kept me company . And I've loved reading everyone's stories and all the valuable information you have taught me so thank you 😊

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25 Replies
Star13 profile image
Star13

So sorry to hear about what you have gone through. Unfortunately it’s not an uncommon story as many Doctors do not understand how to treat this condition. It’s very very important that you find a APS specialist weather that be a heamatologist or Rheumatologist that is treating APS patients as their main patient so they fully understand and see many manifestations of the disease. Once you do you will get on the right combination of drugs and I’m sure feel better.

Where abouts are you located so we can point you in the right direction?

in reply to Star13

Hi thanks for your reply star13 hoping not to be waiting to long for hemo appointment. I'm in the North Manchester area

Star13 profile image
Star13 in reply to

In your area the best APS Doctor is Prof Ian Bruce here is a link to the hospital and some info about him.research.cmft.nhs.uk/our-te...

in reply to Star13

Thank you for the information. do you ask your gp to be referred is that how it works

Star13 profile image
Star13 in reply to

Yes that’s correct. Unless of course you can afford to see him privately. If that’s the case you don’t have to get a referral letter although some like to have one.

MaryF profile image
MaryFAdministrator in reply to Star13

Good idea, get your GP to refer you Hidden

MaryF profile image
MaryFAdministrator

Thank you for taking the trouble to write up your history to date, it not only helps you, it helps us on here to share our histories and gain support and solidarity from each other. It is important that you have a specialist who fully understands this condition, if you let us know where you are located we can try and help with that, it would also help your GP. It is not uncommon to have a problem with B12 alongside this condition, I do myself, plus often Thyroid problems. We always suggest on here getting your levels of Folate B12, Ferritin, D and Thyroid levels checked. I hope you continue to improve now that things are being looked at more thoroughly. MaryF

in reply to MaryF

Thank you Maryf im hoping so im just going to have to be patient as the back log ive been told to see a haematologist will take some time. I've had extensive blood work done so just waiting to find out the results of them from gp. Im in the North manchester area thank you

Adn28 profile image
Adn28 in reply to MaryF

Hello Mary, May I ask you what B12 problem you have? My B12 level has been 2000+ for several years, and none of my doctors can figure out why or what to do about it, and I am so worried and concerned. I never connected it with my APS.

MaryF profile image
MaryFAdministrator in reply to Adn28

Mine was below 200 and now not so with regular treatment. However, all I can say is if a result is normally exceptionally high, normally further tests are conducted to see what is going on, sorry I can't be more helpful. MaryF

TJSTICKYBLOOD profile image
TJSTICKYBLOOD

Hi, thanks for sharing your story . My diagnosis took 17 years whilst all the damage was going on inside this resulted in an occluded kidney a clot to the bowel, high signal lesions in the brain, portal vein occlusion and double popliteal artery (both legs) it’s my legs that finally got my diagnosis . I really resonate about the legs as suddenly walking was just so painful I remember walking up a small hill my legs hurt and I was exhausted . It was a huge effort I bumped into a friend and just burst out crying . I went to the doctors who referred me to a vascular consultant who referred me to a haematologist . The haematologist took me into hospital to get me a diagnosis after 5 days of tests and discovery of the damage listed above I was finally diagnosed .

in reply to TJSTICKYBLOOD

Thanks for sharing your story with me wow thats alot of stuff thats happened to you. I hope you are much better. Can I ask how are your legs now its been 4 weeks for me and im still struggling to walk. I've been told it can take up to 6 months for clot to brake down as blood thinners do not break a clot up they just thin the blood. Your own body does. They also made me aware some dvt patients don't recover fully with full mobility some have lasting damage . Oh my they never tell you how painful they are they are definitely painful. Im a runner and I've never been this inactive .

TJSTICKYBLOOD profile image
TJSTICKYBLOOD in reply to

To be absolutely frank I still have ongoing issues but I occluded both popliteal arteries . You sound far fitter than I ever was and that will hopefully help your recovery . Always happy to chat if you have any questions .

HollyHeski profile image
HollyHeskiAdministrator

Thank you for sharing your story and history, keep this to hand as it so eloquently has it in order for your specialist when you get to one.Your husband and you are both right and wrong, as so many of us have learnt.

My first stroke was when I was 35 and reading this (as I am now a lot older than you) pains me this is still happening.

Hopefully you are on the road to feeling much better and more importantly getting the right medication.

Whilst you are under the hospital for your clot in leg, see if you can see an APS specialist urgently within the same hospital, failing that you have a good referral above.

Take care x

in reply to HollyHeski

Thank you sorry to hear of your stroke hope you recoverd well as you could do. I will be asking to have a urgent referral aswell . Just trying to get my head around with the warfrin I've had no change with my levels in the last week still the same 0.9 so they have put my dose up. Thank you

HollyHeski profile image
HollyHeskiAdministrator in reply to

It's a fine balance of diet and warfarin to get your INR up to correct levels, I'm hoping they have you on heparin until your up into your range? Another reason for you to see an APS specialist.Lots on here can give you tips with warfarin.

We can all share our experiences on here, which really helps getting your head around APS.

What I have found is not one solution suits all, so keep an open mind, we are all quite unique. You will get there.

in reply to HollyHeski

My diet is probably to much green vegetables which I eat alot of but the nurse has told me not to change anything with food. As she said she will work around me. Yeah I'm injecting enoxaparin aswell 3 times a day. only have 40ml pre filled syringe as its like gold dust to find 120 mls. My tummy has given up with taking any more injections so I'm using the top of my thighs now.

HollyHeski profile image
HollyHeskiAdministrator in reply to

I have been on heparin now for over 15 years (Unable to take warfarin) - my body at times rebels at times lol!Don't like the thighs, as seems ages to heal and I havn't worked out how to self inject into the arms.

You can go around the side away from the tummy.

Your doing well x

in reply to HollyHeski

Wow long time of injecting then im use to injecting IM with b12 in arms. I don't know if its just me but finding its gotten harder to inject over time with subcut its like it take ages for the needle to piece the skin and go in. I'm use to needles and injecting myself but last few days I will be honest I've struggled . I told the nurse I developed this rash all over stomach . Thanks for that I might try the side of of tummy instead it seems more painful in thigh but that could just be me

snorkle272 profile image
snorkle272 in reply to HollyHeski

Holly, I have APS As well as being a long time diabetic. I have to inject insulin up to seven times a day, and must vary the sites. I have learned to inject in my upper arms. If you put your back to a door frame, you can get at at the fatty part of your outer arm. Just make your arm into a wing shape and rest it against the door frame and inject. It hurts less than injecting into your thighs or legs. I hope this helps.

HollyHeski profile image
HollyHeskiAdministrator in reply to snorkle272

Thanks, still unable to do arms, one arm effected by strokes so double trouble Good tip for others as well - 👍 💕

KellyInTexas profile image
KellyInTexasAdministrator

Welcome, Beau24

Let the healing and educational process begin.

We all learn together, patients and physicians alike.

It’s really amazing the difference a sub specialist in a field of a medicine can make to a patient with a fairly rare fuses can make.

It sounds like you are finally on your way to getting “all the basic tools in your tool belt!”

( you will find you will now be fine tuning the morning along the way- always! All the fancy new gadgets as they come on the market and approved- or are “ licensed for you specifically.”)

in reply to KellyInTexas

Thank you kellyInTexas :)

KellyInTexas profile image
KellyInTexasAdministrator in reply to

You are welcome, and I encourage you to come to us with help - If we can help direct to you to sources, we will be happy to.

HollyHeski profile image
HollyHeskiAdministrator

Hi, I am turning off this post as it looks like this member has left us and not able to reply. If anyone wants to continue please start a new chat. Thanks

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