Yet another hospital appt-really stressed!

[emmaj]

After a 5 day stay in hospital where everybody was wondering if i actually had APS or not, and not having access to my previous hospital's records I was discharged because of childcare issues and have had more bloods taken and today I go for the results. APS is all over my records that were sent from my GP, and on discharge a doctor finally agreed that was what was going on with me and said she'd make sure it was on the discharge summary. Ive been through the system so many times and im really worried that when i go to see my consultant today he's going to change his mind just because my anticardiolipin antibodies are hiding at the moment - im also really worried if theyve found something else too! Im really suffering at the mo with eye temple pain,cheek and left side numbness and like electricity pins and needles in my fingers. I am usually ok with these appts but today i just feel really sick with worry, scared if they dont find something and scared if they do! More worried that theyre going to go back on the decision to warfarinise me and im going to end up back around the appts without medication waiting for yet more tests!! Does anybody else get this streesed and frustrated with it all?? How do you handle it??

[Sue2803]

Its really difficult, but you must make a list of all your symptoms and go through them with the doc, make them listen. You need to get to the bottom of what is exactly wrong so you can get the correct treatment, I know its hard but you have to remain firm.

Good luck

x

[MaryF Administrator]

I really feel you for you, no matter how stressful, do keep very careful notes and descriptions of episodes and appointments, you will get there in the end. It would appear that a great number of us, have unnecessary stress caused by lack of information, training, medical attitudes or scanty testing - this is awful when the condition itself is a stress, let alone the others ones many of us have alongside this. Keep positive and keep your support on here.

Mary F

[jetjetjet]

emm. did you read what i did with new neuro.to me if it ment giving her info, and teling her maybe her nurses could read and understand then so be it , well after last app. i would say it worked. dont be affraid to hammer it to them if this what it takes so you know you are getting thru to them. if for your own piece of mind. my self i like talking to the nurses prior to seeing doc . they let her know just what to expect when she comes in . it does work . hang in there jet

[paddyandlin]

Hi Emma welcome to the site i think everyone abbove is saying what i would say which is just keep at them someone will listen and you only need one person to then get the ball rolling please keep us informed and if you want to talk we all hear to listen

paddy

[jessielou]

Hi Emma

sorry to hear in hospital and a nightmare when they will nit listen.

Re your next appointment, take daily diary of symptoms,i took 2wks worth. Also write any questions and a letter explaining how you are feeling, and what effect this is having on your life. Stick to your guns hon. You know that things are not right.

Sending you hugs sheena xxxxxxx jessielou xxx

Ps my anticardiolipin negative, I definately have Hughes syndrome. I am lupus anticoag positive Hughes syndrome. Lots are sero-negative too!!!!

[jessielou]

Ps again sorry if last post not make sense! I have monster brain fog. Another headache/migraine on the way I think. Take care gentle hugs sheena xxxxxxx jessielou xxx

[emmaj]

Hi all tanks so much - I was right - no bloods have even come back yet - waste of time going!! Im being referred back to a haemotologist that I have been under before and had postive anticardiolipin results with in the past. Nobody seems to be willing to diagnose someone with negative results on clinical evidence - although immunoglobin says i have auto immune disease - and antiphospholipid is all over the notes theyre still not prepared to warfarinse until they get a positive - which may never happen. In the meantime i have to just live with the pain and blurred vision and everything else that comes with this awful condition and just get on wth it, im really worried because i stroked while on aspirin so its obviously not enough to stop it happening again and obviously im in some sort of lapse at the mo. Just cant handle the stress of yet more waiting an the going around in my head what needs to be said and what needs to be done and getting nowhere! Im going to write a letter to the consultant to say what is happening and hope he can collate all the blood results etc before i see him - if i sit in another hospital appt while someone spends the whole time looking through my notes umming and arrghing then asking for more bloods and having to wait 3 more months to get them results to - just to get nowhere then im gonna scream!!! Anyway - rant over and thanks guys x

[jessielou]

Hi Emma

my haematologist was the one who referred me to st thomas's after rheuny in same hospital said i had Fibro and she couldnt help me, she did refer me to haemotologist tho, so may forgive her for being rude and dismissive.

St thomas's should be able to help, if you not already going ask haemotologist to refer you. keep pushing hon. I know its a long road, but please don't give up.

Take care gentle hugs sheena xxxxxxx jessielou xxx s

[marycath]

Hi Emma

so sorry this is taking the toll on you, waiting for results, especially after being in hospital. I'm afraid that is what happens, Most of us have gone on for many years, thinking each week/month/year to find the doctor who will help. I think this is the beauty of Support groups like ours- we can let out our frustrations- knowing so many of us have had to become patient patients, and just learning to live a day at a time, so that we find out how we can cope. Our hobbies, families, friends, even our day to day household tasks keep us on the right track, like our gardens, favourite authors, soaps like Home and Away (as an Aussie I've watched it from Day One). Certainly when I did get most of my Hospital Records in 2006 it was great to see how it did fit in with my research on APS/ Lupus and associated diseases, only real d/x last year. All the best. keep in contact

[sharonbockemehl]

Hi Emma,

I know as well how frustrating this can be! I had PE in 2004 was put on warfarin and dx'd w/APS about a yr later. I have had several test some were positive and some have been negative. I have been told different things about how long I should stay on the warfarin. Recently I went to a new Rheum and told me that APS can be intermittent but IT NEVER GOES AWAY! Therefore he recommends that I stay on it for the rest of my life. Personally I would rather do that than always worry when then the clot is going to form. I know that it would always be on my mind because it already is. That day was the scariest day of my life. Good luck to you!

[emmaj]

Thanks x

[paddyandlin]

Emma i cannot say much more than what everyone else has said except you know in your heart how you feel and what is right and do not let anyone tell you otherwise and also information is power always ensure you have the info on hughes that way even if you get one person it will make a diffrence i promise

paddy

[Annslack]

So sorry to hear how difficult it is for you. As others have said , many of us have been and are going through the same. In terms of how to cope with the stress and the fears , I can share a few things that I have found helpful. They are also things I taught when I was able to work. One is setting a goal and imagining that you have achieved it . Such as feeling well and safe, and supported by a good medical team. Keep bringing yourself back to those thoughts when your mind is overwhelmed with fears . It is a technique used by athletes to improve performance. You can practice relaxation techniques such as breathing routines or vagus nerve techniques or anything you already use. Our brains dont work as well when we are frightened. Calming the body can help us think more clearly and creatively. There are loads of really useful videos on you tube. You can soon find favourite people to learn from.

You can imagine a lovely picture of you feeling really well and doing something that you love can really help and combining that with looking upwards. I used that to get through a very long distressing hospital stay. I imagined myself at the peak of a walk in the Dales.

These are things that work for me. There are loads of simple self help tools that are well explained online and it's worth finding something that works for you. They are all ways that seem to calm the stress response.

Sending you lots of love , I hope it helps to know that you are not alone and that we can support each other to get to a better place.

Ann