Sticky Blood-Hughes Syndrome Support
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URGENT - Any ideas or help gratefully received!

I am being forced into a psychiatric assessment here in Spain for symptoms associated with APS. If I don’t go it is a possibility that all treatment that I currently receive will be withdrawn. Understandably I am now really worried and nervous about this. My INR level is either below 1.3 or above 4.8 constantly and I haven’t been within my target range for more that 18 months. I have a INR target of 2-3. I am experiencing migraines, loss of the use of limbs (temporary thankfully), loss of the sight in one eye, violent trembling to name but a few. Here they are putting all this down to stress, mid-life crisis oh and the menopause! Therefore, I have searched extensively on the internet and printed off information from Wikipedia, information that both Professor’s Hughes and Munta Khamashta have had published in Spanish re my symptoms to take with me to my appointment next Monday. I tried to find something relevant to my symptoms on You Tube too (in Spanish) but haven’t been successful. I would be really grateful if anyone could offer any other ideas, or do you think that I have it pretty well covered?

As a footnote just to let you all know when I am fit enough (INR currently 1.1 and recovering from what I believe to be yet another stroke) I shall fly to the London Bridge clinic. I’ve spoken to one of the receptionists there who was most helpful in advising me about an appointment with them.

4 Replies

Hi there, you sound very organized, great that you are taking the papers along, (already in Spanish), and just tactfully, let them know that your level of concern re medical expertise has sent you to London Bridge for more fine tuning, if they know that you have an appointment coming up, they will be most careful to listen more efficiently. Tell them you are just awaiting confirmation of that. I also suggest that perhaps yo get in touch with Kate Hindle at HSF charity office if possible, either by message on here, or by telephone.

As you can see there is real knowledge in Spain: See link below: Perhaps they can contact somebody within Spain who actually has some real knowledge of the condition:

The Best of luck. Mary F


Hi, yes well done for getting it all so organized.

I too had to go for an assesment!! I thought it was ridiculus...but I went along with it as it looks better for you if you do!!

Well at the end of mine the 'doc' said she couldn't understand why I was actually sent there!!!!!

So hopefully.....which I'm sure you will will be told the same :)

They now have agreed to make me an appointment to see someone for the problems I have been having (sleep disturbances!!)....instead of trying blame it on something.... e.g. like your past, depression or your age!!!!!

Hopefully you will get through it all fine & then get listened to corectly, let us know the out come xx


Remember when I told you had the pleasure of being sent to Psych unit here in Madrid pretty well on same basis? Well after major panic and desire to prove it was a medical need and not psych need it was all a big let down - specialist spent 5 mins chatting with me, looked at my history and said that he couldn't understand why I had been sent there as I was clearly rational and just needed GOOD medical care.... I was back out on the street in about 15 mins!! (And they wrote a note to the speciatlist who had sent me there and to the hospital board)

Anyway, there was a caveat to it as when I next arrived in the UK and saw Prof Hughes and told him the story he said 'shame you didn't get a diagnosis of depression as it is a known clinical manifestation of APS and would of actually reinforced your diagnosis!! AHHH!!! Don't ask me where on any papers it says that.

Anyway, two quick tips of things I did: I refused to consider being tested with psych tests in Spanish since unless you are truly bilingual you could get an incorrect result simply by using the wrong word (2 psychs agreed with me). So I paid to go to an English speaking psych to back up my 'I'm not crazy I just need the proper treatment' plea with a report confirming wasn't depressed, or stressed other than because wasn't getting the correct treatment.

Secondly, from 2007 until 2011 my INR was a disaster week to week going from 1.1 to 10+ in a flash without changing any food, drink, dosage etc.GP was excellent but we just couldn't get it stable. Only got 'saved' when a specialist in the hospital where I was having my Rituximab treatment said that I was clearly a case of someone that shouldn't be using Sintrom as is the normal here but should be on the Spanish version of warfarin. So if you are on Sintrom please see if you could get a trial to switch. My INR has now been stable for over a year... as in every test almost precisely the same result with only a few blips.... I don't know in Valencia if you have Warfarin as standard but if you are on Sintrom please look at changing it and see if you can get the same 'miracle' I got. Send me a message offline if you like about what/when/where etc for getting it sorted.

Good luck at the appointment, take your husband and make sure you have all you want to say written down :-)

Then let us know how you get on...

Louise - The Madrid One


I spent a week here in France in CHU in Limoges being diagnosed and very many tests...afterwards they gave me an appointment to see a psychologist also. He just confirmed what I knew, that I was in pain and spoke to the Doctor who sent me there and that was and out in 5 mins!!!! as I had already been put on cymbalta although it did nothing for me so my GP stopped it!!!! and was then put on plaquenil! seems to be a fairly standard practice so do not panic too much . Not to say I didnt freak a little but all was well in the end.


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