I have Antihphorpholipid syndrome, only diagnosed last year, but after Years of silently suffering because of ignorance of so meny doctors. My symptoms have got a very lot worse rapidly. I have had a stroke, a leg DVT, I have the brain fog, the I forgot.i forgot part of this I wanted to writeChest pains, breathing rapid,heartbeat, seeing zig zags,blurred vision,temp loss eye sight, dizzy like walking drunk,fatigue unbelievable,hot sweats, slurring, shivers,swallowing problems, weight lose because it hurts after I eat and a lot more, my INR IS never stable, I am treated with warfarin and injections every night, and HYdroxychloroquine 200mg. I have suffered of the scale kidney pain, admitted spent 5 days in hospital,p this month then no stones in scan go away! I’m convinced blood clot.
I broke my left humerus in December it needed surgery, the surgeon refused to operate, he just saw STROKE. so my arm is smashed to bits, I have the X-rays to prove it, it’s not even inline to heal, my shoulder is dislocated, they will not even put it back in place, to even help the pain. and I live on MORPHINE. My work is about to sack me for being off too long, yes they can. I have the union involved, they can sack you even with a doctors sicknesses certificate . My hair, well, I’m female, falling out, gone thin, white.And I cannot put a bobble in my hair on my own, I cannot dress or shower on my own. My SSP RAN OUT, Yes, I have always worked in the UK, paid my taxes, so after SSP, THEY allow you ESA. £72 ish a week. My food, housing, you know in the real world...mortgage,water, electric, gas, green bin fee for actually re-cycling compost.taxes,prescriptions, dental. If I had never never studied hard to get a job, paid my way, saved hard to get a house of my own, still paying a £700 mortgage. After suffering Domestic Violence, from a serving member of the RAF. AFTER me having to put and help my 3 daughters through all of this. This is what I GET.
I CANT EVEN GET A INR SELF TEST MACHINE SO I CAN STOP THE HOUR LONG WALK TO THE DOCTORS EACH DAY AND BACK. SOME DAYS, I cannot move, I pain, it hurts, some days, I don’t eat...because I cannot move to get a drink or food. Most of the time I cannot get to the shop to buy food, and to try and lift , carry.... it feels like I have done a marathon. My family do not understand.
You think I’m joking? It’s unbelievable
Written by
mariamoo1
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HI, firstly where are you located, if in the UK we have a list of recommended Hughes Syndrome/APS specialists under pinned posts over on the right hand side of our forum. If not in the UK then probably we can still help you towards the direction of the right medical contact.
A good consultant would test your levels of vitamin D, B12, and Iron, plus a Thyroid panel. You key out of this situation is to have the right medical specialist to guide your care.
You also need to access your local disability adviser via CAB in your area. this would be an important step.
Once you have looked at the list of recommended specialists, please do go to your GP with your most articulate and supportive, friend, neighbour, colleague or relative to push for an urgent referral to one of them. That would be a good starting point. It is in your GP's interest to have the right specialist guiding them as well as yourself.
I don't think you are joking and it is a very distressing story.
I hope you haver an understanding GP because this is very important as s/he needs to support you against the authorities who frankly don't seem to be able to recognise people who are disabled.
As Mary has suggested, you need to find either a rheumatologist with expertise in Hughes/APS or a haematologist. Look at the list available and then ask your GP for an immediate referral.
My choice would be Dr David D'Cruz at St Thomas' Hospital, London. I don't know where you live but hope you consider him. If it is a long way, there used to be an option to stay overnight at The Simon, hotel, on the NHS, which you would arrange when you speak to St Thomas'.
It seems to me that understandably, you are very distressed and your family do not understand. Perhaps if you try and get information for them so they can read about your condition, they may better understand? I am concerned about you. Are you living alone?
It might be helpful if you could talk to someone. I understand your priority is to get to see a doctor to alleviate your symptoms, but psychologically, you are also affected and this also affects us physically. Ask your GP for help.
You do need some much help.For not to treat you for the broken arm wether you have APS or not is neglect.how can they leave you like that. Are you under a specialist APS as you must fight for.As Mary said you need to take a friend to GP armed with that long list of symptoms and insist you get help.The arm needs treatment...it's a joke not to do basic care.
Please kerp us up on your progress, and I fervently hope there is progress! As mentioned above, consult with a specialist who has aPS experience, and dont put up with having your broken bone ignored!
A very big Thank You to you all for taking the time to not just read about me but also to take the time to reply. I did get an emergency appointment with a Rheumatologist last Wednesday, he was useless, just didn’t want to know, I felt stupid. I have a GP appointment on Tuesday, and will have to get a taxi, as no appointments are available for me to walk too. I have a car sat there,but cannot drive with a broken arm. I also got called in for a ESA health assessment, arranged so someone could take me, they had to take the afternoon of work, then 50 mins before the appointment the ESA Phoned me and cancelled the appointment. I feel terrible as my friend lost half a days earnings, and upset the workplace.
My Inr is very low now,1.0 it should be 3.5-4
I do feel terrible, my eye sight, zig zags, flashing. Pain and weakness, hot sweats, chillls, walking like drunken. Let’s hope this GP will help. I will keep you updated. I live in Norwich, UK. So I can travel to London by train or coach. One of my daughters is studying at Greenwich university so I could stay in her house share, I just feel I would not cope with the journey and get confused,lost.
As the others have said you really need a Specialist of autoimmun illnesses who understands that we feel like that when we are not anticoagulated. With an INR of 1.0 you are not anticoagulated at all.
Ask your daughter to help you and read about your illness so she will understand how it is to have APS. You need help to get to a Specialist and be anticoagulated before something even more drastic happens.
I wish you good luck to find that man or woman and to be able to feel a lot better.
Best wishes from Kerstin in Stockholm (ex admin here)
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