Hi hope u all had a good Xmas I work up just over a week ago had pain in my left side of my head and Mr face gone numb then my left leg was so heavy I could not lift it up I work my husband up he phone the doctor then the doctor phoned me back told her wot was wrong she ask if I cold get down to doctors at 11am if not to phone her back my husband got me out of bed washed and dressed he get me there and the doctor took me in as soon as I got there she cheques me over sed she feel for me she sed me face had dropped a bit then phone the hospital and asked wot she sould do then the strok nurse told her to get me to ANE in anther town so they got me it to the car and off we went got they told them all about wot had happened the doctor took bloods all the stuff u do if some ones had a stroke wheat for a CT Scan then took me to the wash acute ward where I lost my brother in January right next bed did not wont to be there so told them to keep the curtain closed seen 2 doctors that dat one sed I had all the Simtons of a strok but dose not think I had had one I all so did have a stroke in February .but then anther doctor sed I had so I did not know wot to think .so a few day whent by I had a mRI Scan and more blood test then my doctor I had seen when I had my stroke four seen me sed why are u here then looked at my sed they was doing more test to find out wots gapped so I cold not go home and the OT wonted to put me in a care home for 6 weeks rehab I sed no way so they give me 2 simmers and a stick I had told them I had been crawling up my stair since February cos I have no hand rails so OT sed they would get me some put up urgent so I colud go home and be safe had to get a think to go round the told .so I sed can I go home now the only way I can go home is if I stayed in my bed room till they put handrails up and a ambulance take me home and Carrie me up stair to my bed I was fine with all that then then the doc sed no I can not go home 
not happy so Saturday came was think they would do test on Monday but a doctor came to see me say y did the doctor not send u home I wolud have cut a long story short he was nasty had me in tears and all the staff had been so nice I told home I don't under stand one doc say I had a stroke one sed I have not one sed I can not go home one sed I can so wot is wrong with me we don't know u can have test when u are at home come in hospital as a out pas so I phoned my husband up to come pick me up then OT come and sed can not let your husband take u home I sed doctor sed get in the real world u got here and u been crawling up your stair all this time he can so off she whent to see him then came back and sed he can not take u I will arrange a ambulance will take u and they sould put your rails up on Tuesday my husband came and demons he see the doctor that just seen me I sed I don't won't to see him again so he came to see him he sed he was sorry .any way I got home family came to see me and my husband was off till the weds then back to work so I would be on my own but they came or phone to put any rails up I phone and left messages for 2 days they never phoned back so I gess its out of sight out of mind DN had to come and do my INR cod I am house bond so the day my husband when to work at 5am I had to come down stair so I can let DN in so week later still ment to be in my bedroom I would have cut my wrist going mad up there still don't know wots going on not happy but I got my leg going it keep swelling up sorry for the long rant all the best Lesley 61
APS/strok : Hi hope u all had a good... - Hughes Syndrome A...
APS/strok
You certainly had a trial, hope you have managed to get it sorted now. I admire your determination to crawl upstairs. well done.
That the only way I can so got to do it I asked gate way to care to help me and they never been out to see me just sent me a letter if I had had rails it woul help me but will see may get them next year lol hope not will let u know thanks Elaine x
My good, what an adventure you have been on! Thank you for telling us all that.
Hope you have one doctor that knows you have got APS. With this illness it is important to cheque the INR often so you will not get Another stroke. Could you ask for a selftesting machine as it is difficult for you to get to the clinic to do the INR warfarin control ?
It must be difficult now when it is Christmas and all the following hollidays but you could ask perhaps.
Take care and tell us please how it goes for you.
Best wishes from Kerstin in Stockholm
The DN been once my INR had gone down to 1.7 it soluld be 2.5 I had to phone up to find out wot it's was so I colud chage my med I did get a letter 2 days after who do u asked for a testing machine will keep u up to date I am hoping that DN will come on Monday xthanks Elaine
Hospital just phoned to say my INR is 1.3 not good but told them I not been well for 2 days and think I got a chest inftions but not been coughing nothing up just out of breath and weazing she told me to phone just my GP but I've not done I will bee fine my INR sould be around 2.5 x
Hi Lesley
Sorry to hear the hospital did not treat you well - at least the OT tried to help and stopped them sending you home in your husband's car! There is a service in every hospital called the Patient Advice & Liaison Service or PALS for short. It would be a very good idea for you or your husband to contact PALS for your hospital, tell them you are extremely unhappy with how you have been treated and that you have been discharged unsafely as the stair rails etc which they said would be fitted urgently haven't. You could also discuss the fact that you were being told different things by different doctors and one of them was unpleasant to you. The PALS is used to dealing with upset patients and will look into your problems sensitively, you could probably get hold of them by phoning the main hospital switchboard and asking for them. Best wishes and hope you feel better soon.
Thanks I will do that on Monday see wot happens will let u know x thanks Elaine
If they say it is caused by APS snd no dign of a Stroke, look into something called FND. fndhope.org
All the best Andrew
Hi, lots of information here on the charity website, including the blood tests and also the symptoms, and also a list of Hughes Syndrome across the UK who understand the condition. hughes-syndrome.org/ It is best that they refer you to the nearest person in your area, please come back to me or us if you need further help or information. MaryF ps welcome by the way
Rant away! That's what this site is for, and you certainly have cause to rant after this hospital experience!
Hoping that 2015 will be a more stable year for you!
Gina
I agree with MaryF that you should try to find someone who understands APS. So very few doctors know of this rare illness. She knows very well what to do in a situation when you must find an APS-doctor to be referred to.
Where do you live?
I also agree with Gina who is hoping that 2015 will be a better year for you. I cross my fingers for that!
Kerstin
Thanks he's just looked on the Internet now he will have to get on tuch with them when he gets home from work tomorrow will let u know thanks Elaine x
Hi all had DN here for my blood for INR she could not get none so she called anther DN out to get some she did get some then the hospital phone to say that the name had come off and could I get up to hospital to get some mor done I sed no I am hose bound she sed Carrie on with the meds u are on DN will come Friday I sed y can they not come tomorrow she then can not then I got a phone call off the DN she was cross that that my name had come off so sed she was sorry and she would come back next day to get some more blood she did do too she put my name on it in front of me. And OT been out to see me to day to see wot I need he's goning to get on to who's ment to be putting my hand rails up and going to get me sorted out fell better that think are going right I need to get sorted I am going away on 16th just for 4 days so won't to feel better for then so fingers crossed I will be thanks Lesley 61 x
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