I did what the Neurologist suggested,out of curiosity ( and stupidity ) I came off the Warfarin. I now can't get my eyes to work together properly. So I can't drive and I even have to get someone to come with me when I take the dogs out for a walk. I see my Gp on Tuesday. But whether I get anywhere there is doubtful. I've been waiting nearly 4 weeks for this appointment ! But seeing I no longer have a specialist ( as explained in earlier post ) I thought I would do as suggested. Whether its just coincidence that my eyesight has diminished since stopping the Warfarin. I don't know. Any body else had this problem. ?
In the letter I received 2 days before my appointment with the MS nurse last week. It said " probable " MS. So I'm being told one minute I have it, then next minute its only probable. 2 years ago it was APS. I appreciate symptoms are very similar,but it doesnt help my confusion. !
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Totallysick
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What did your last set of blood tests say, these ones: hughes-syndrome.org/about-h... and unless the Neurologist is off our list of recommended specialists, I remain convinced that you need further urgent investigation, and your Hughes Syndrome/APS diagnosis not to be removed.
People can and go in and out of negative/positive testing, and it is possible to be sero negative for this condition. If this were me, I would be dancing up and down and making a very loud noise for urgent help now and tomorrow!
If your symptoms get worse, you must firmly seek help, taking a person you trust with you. You must explain to them, that if anything happens to you, you will hold them directly responsible! MaryF
I was told to stop taking Fragmin by a neurologist, once, and I had two TIAs in a day. I was so ill that I phoned my Haemotologist and he told me to start Fragmin shots immediately and he also got my GP to prescribe Warfarin.
If you are having these symptoms I think you should go to A&E and get them to give you Fragmin or Clexane and start you back on Warfarin, keeping the Heparin shots going until you are back in your target INR range.
You also need urgently to have your APS managed by an APS experienced consultant. See the list on our charity's website at this link:
ps: Debate from the House of Lords a few months back, frequently it is neurologists who are not getting this condition, (although of course some do) publications.parliament.uk/...
Can my Gp overrule the Neurologist and put me back on Warfarin ? Do I try and get my INR taken. To prove a point. That my bloods are wrong ? Sorry for all the questions
If you take your INR today you have too low INR as you have no anticoagulation. You probably have what most ordinary people have 1.0 in INR.
You must have an APS-Specialist!! I do not know how you can make your Doctors to understand that you must always be on anticoagulation as they probably do not understand what APS is about - too thick blood.
I live in Sweden with other rules how to get on with your health and Doctors responsible for your health. This is a new and rare illness and very few doctors know what symptoms we have and how important the anticoagulation is for us.
Please do as Mary, Dave and APsnotFab have said: seek help as soon as you feel worse.!!
Thanks. I used to have a Specialist. But now I haven't. Think I'm going to have to insist on another one. My bloods have always been a problem. Not staying at 2.5_3.5. At all.
Now Neurologist says I might not have had a Stroke after all. It might all be linked to M.s.
I can understand that you are confused! I guess you have a diagnose of APS. Then it can have been a stroke or a mini-stroke . We very often (like myself) have microclots and microembolies and they are not seen on an ordinary Scan of today. They also need anticoagulation as they do damage to our different organs.
It can be difficult to differ MS from APS but you have got a diagnose of APS.
Please INSIST on an Expert. I selftest and have an INR between 3.2 - 3.8. Most of us with neurological symptoms need the higher target between 3.0 - 4.0 or even sometimes higher. As prof Hughes says: we do not bleed from APS but clot. In fact we have very thick blood that has to be properly thinned. We have to fight for our life to get the right doctor and to be properly anticoagulated!
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Thanks for comments.
Confused & anxious about APS
Confused
Inr & flu jab.
Possible SLE now but confused
