Hi I suffer with lower limb infections quite alot it's to the point I can not stand, sit and walking is so painful I collapsed, I was bed bound for a week couldn't get downstairs and had to crawl to use the bathroom. This in turn has made my INR results go all over the place.
Does anyone else suffer with this?
I have hearing lost in my left ear, vertigo, memory fog all daily, thinking of words to say out loud is getting harder. I tire more easy. I have a had social worker for my daughter and she just piled the stress on and didn't nor wanted to know how to understand my condition. We've complained too.
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KarenOR
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I am really sorry to hear that you are having such an awful time, please call in any supportive favours off friends and families. Also consider finding yourself an advocate, if this is tricky I will endeavour to try and help. You must see your main consultant, are you under one of our recommended specialists? If so please do get in touch with the clinic. Also visit your GP to check your vitamin D, Iron and B12 plus a full thyroid panel, as this often gets missed. It is very important that your levels of the above are checked as if they are off target it will make your health far worse. You must state when you ring up your consultant's secretary how urgent it is to be seen, and make sure the above tests are done.
You need somebody to go with you to the GP, and also somebody to help you put your medical history in bullet points, (or maybe you can do this bit), also your medication and symptoms, so that you find any up and coming appointments easier to handle. Also if you have having trouble with school due to not being understood re your child, please telephone these people: Parent Partnership, they operate across the country to offer support in difficult situations. iassnetwork.org.uk/
I enclose the other useful websites below for yourself.
Hi Mary my vitamin D and B12 are fine, they said it's stress.
Been fighting the social services for months because we caught them out lying and now they put my daughter on a child protection plan that my daughter doesn't want, she wants living alone, it's made her mental health state worse.
These people haven't got a clue what damage they do to families as a whole, they don't understand children with mental health decline.
We've asked for an advocacy to help but these people don't reply.
I have read what you write 3 years ago when you did not have an APS-Specialist and were insulted by your Doctor. That is what happens to a lot of members here and that is both tragic and unaccaptable. From Doctors that do not understand this illness. Very few do.
I read what you write today and I wonder if you really have found your APS-Doctor as I think that you are not properly anticoagulated. Do you live in England?
Those symptoms I had before i was anticoagulated with Warfarin. You should not have them when on Warfarin. We need an INR of around 3.5 to get rid of those symptoms even higher some of us. Also a steady INR.
I feel so sorry for you as I understand how you feel today.
Read "Sticky Blood Explained" by Kay Thackray. She has APS and writes about different symptoms (also about those you have got) and how it is to live with this illness. I have it in pocket. It is good also for relatives to understand us.
3 things are important; 1) a diagnose 2) a Specialist of APS 3) a treatment that will thin our blood with an INR (if it is Warfarin) around 3.5 and also steady.
Stay here as we can help you in your difficult situation I think!
Hi I have doctors support now, it's social services that are giving me the stress, the last meeting I had with them I left a copy of Lupus and APS with them and the top of both the sheets it said not to have unnecessary stress as it makes INR levels unstable. I very much doubt that they read them as the stress put the whole of the family has been unbearably.
I'm tired more often now my INR is so unstable that I'm back to seeing the nurse weekly instead of 6 weekly, meaning that we can not go anywhere and trapped by INR appointments. We've complained to the council and they've not listened and my own GP has complained as well. Since November I've had hives on my face and other stuff going as a result of stress. Something I told them I didn't need from the very first meeting.
If you cannot control INR and Warfarin does not work in your case your Specialist must consider another althernative like Fragminshots or even oral tablets as you must have your APS anticoagulated otherwise your life is in danger. Ask for selftesting. As you say you have doctors support now. Let them show it.
Mary has also given you very good alternatives. Nothing works when you are not medicated (anticoagulated) correctly. Get help from friends like Mary says!
I still think it's the unwanted stress that's caused this blip it's the first time it's happened, my GP has wrote to the social services to tell them to stop interfering as my health is at risk. But still the continue to harass us. We've gone to the councillors and MP now.
Yes, I also believe that stress can affect the INR but you must be anticoagulated in some way or another at a steady level. Also you do not say if your INR is set at a higher level. Often it happens, especially if we do not have a Specialist, that the INR is set too low because the Consultant does not understand that when having APS and these neurological symptoms we need a higher level of our INR.
I understand that at present you have so many things going on around you but still you are most important and how your illness affects you just now. Ask them about selftestiing. I selftest every second day and my INR is set between 3.2 - 3.8.
Demand anticoagulation that works for you and that you are free from clots and strokes etc in one way or another! Your Specialist must help you with this!
Try to eat the same food and especially the green ones like broccoli and brusselsprouts.
We need the greens but the same amount every day which is important. Changing drugs also change the INR and also alcohol and wine. Ask to have an INR not under 3.0. I am not allowed to go under an INR of 3.0 like several others on Warfarin. If I go under 3.0 I have to take a Fragminshot.
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DAUGHTER IN HOSPITAL WITH BACTERIAL INFECTION
Does anyone have problems with continuous bouts of infections?
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Possible clot in leg 
