Sticky Blood-Hughes Syndrome Support
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Totally sick and confused

I haven't written for months,because I write something and it disappears. So this is the 5th attempt !!! I haven't written since I won my PIP Tribunal-

Basicly I had to have loads of tests done. So because the weather was bad in Jan 15 Professor Belch rang me. As all the test hadn't been done,all she could tell me was my kidneys were only functioning at 80%. She rang me in Feb because I was really poorly and couldn't make the appointment. Nothing to report because I was still waiting for lots of different tests. I didn't get all of them completed until the end of June. Then I was away in July.

So as I still hadn't heard anything,I went to my Gp she had a letter from Dundee Hospital, not from Professor Belch but Dr Baines saying that due to me not going to my appointments they weren't seeing me.Professor Belch had said to me,not to worry about going ( 4 hour drive,each way ) Until all the tests were done.

Apart from that my Neurologist had done other scans, In Dec I saw the rheumatologist who told me the bottom of my spine wasn't very good.I had arthritis in 1 hip. Also in the future I would need a hip replacement on the other ! Also I had tennis elbow and the start of Carpel Tunnel.

Apart from this, I was having major problems getting my INR to balance.

Then on Friday I had to see my Neurologist.I was supposed to see him in April but he changed my appointment date,and I wasn't able to make that date

So when I phoned to say I couldnt make that date I was offered last Friday or August !

So I went to see him, to be told after 2 years. He doesn't think I have APS. He has decided I have Primary Progressive M S'' !

So he wants me to make an appointment with my Go after he has written to her. Explaining he wants me to stop the Warfarin totally and just have an Aspirin. He is going to arrange an MS nurse to advise me,and blood tests in June once the Warfarin is out of my system. He also thinks maybe I hadn't had a stroke.

So I am Totally sick and Totally confused !


5 Replies

Hi there, do remind me have you had the blood tests for Hughes Syndrome/APS and have you passed any of them? also did you get to see one of our recommended specialists? I do remember that you were trying hard to sort it all out.. but the tests are crucial, and of course some are sero negative. MaryF


Hi. Yes I had blood tests,lumbar punctures and was told I had a stroke and had APS. I saw a Specialist in Dundee,as mentioned in my " moan " but didn't get all the results back from all the tests. As explained. But she said I had APS.

I also saw Rheumatologist and Neurologist. It was the latter who told me I had ppms.



If you have been told that you have Hughes Syndrome/APS by the first consultant then the neurologist SHOULD NOT be taking you off your anticoagulants, you must explain that you will hold them directly accountable should anything happen to you, and do not attend any appointment without somebody with you as advocate. Insist on copies of the paperwork done, regarding the tests, you can have copies, you need to fight hard at this stage. Hughes Syndrome and MS share similar features PLEASE as a matter of urgency contact the original specialist who did the test and gave you the correct diagnosis, ring up consutlant's secretary and use their email address and mark the email for attention of consultant and explain the situation you are in, and why you need the test results done at the time with them. I would also get hold of an email address for the GP, via secretary! This very important, I can't stress how important this is. MaryF

ps make sure you add this to the email letters:




I totally agree with what my colleague, Mary, has advised you.



Hi - what Mary is saying is correct. Unfortunately many Neurologists just don't "get" Hughes and for some reason like to dismiss it. Coming of warfarin would be a bad idea. You can't undo having a Stroke, that's plain to see on your MRI even mine is still showing up 5 years on! So even without (let's play devils advocate) APS you should still be on warfarin. Many brain features mimic MS and Prof Hughes writes about the confusion between the two conditions. In your case you have had a positive antibody test which makes things more reassuring. You must go back to your APS specialist and don't do anything until you have spoken to him/her.

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