Spain

[catno1]

Hi, just wanted to say hello. Just joined! I moved a few years ago to Spain so have some experience of the 'moving process' and obviously transferred all medical services here. If I can be of help to anyone that would be great.

[MaryF Administrator]

Hi there, and welcome, we have many members on here from Spain, actual Spanish residents and also ex pats. So quite a bit of information sharing is going on already as to where there is some knowledge of the condition, which of course is important, I am sure other members will say hello to you from Spain. MaryF

[catno1]

Thanks for saying hello. I've been reading & learning much from the Hughes Foundation site for years, and Lupus Uk. No expert, obviously we're all different with our symptoms, but I've found it good to read others problems & am grateful that I had very good Consultants who started me off on the right path. Sad to see so many haven't have the same experience. Had lots of problems since diagnosis in 2005, but see myself as one of the lucky ones who is fully diagnosed! Had some recent bad experiences here in Spain but soldiering on!

Nice to hear from you, again, thanks!

[Danimgw]

Hi I'm Spanish but live in the UK. I think the Spanish medical system responds much better than the British one especially when one has weird symptoms like ours.

The Spanish one gets blood tests immediately until it finds the cause. The British one the GP's in an indirect way say you're exaggerating until something happens to you. Then when you're seen by specialist then you are in good hands.

[catno1 in reply to Danimgw]

Hola!

Sorry to hear you've had a bad experience. Guess what? Mine is the opposite. Last year I found I was the only patient in my area, Denia, with Lupus & APS. And my Consultant here, a young Doctor thinks I'm on basic warfarin treatment. I'm having to use my UK Anticoagulation team as support now and returned to home testing with my Coaguchek machine & only have my local Doctor for support here! I've had two bad flares over the Autumn/Winter period, thankfully I've a few years of experience so have managed but it's been hard work. My local Doctor is great, she's interested in both diseases and has become a good friend though.

Tell me more about your experiences when you have time. Many thanks for saying hello!

[catno1 in reply to Danimgw]

Hello again. I thought of your note earlier sttaight after receiving a hello from a Spanish female who lives close to me, she sounds frustrated - her care has been poor and she's trying to get a group together here with the same problems.

I have read on site that some areas (as in the UK) have less knowledge of Hughes. Could I ask, do you have knowledge of Alicante, and it's medical system? I have seen, after searching 'Spain' on here the name of a specialist. If you have any ideas, especially to pass to this lady I would be grateful. Many thanks.

My name is either Sue, or Susan. Whichever you prefer. I'm sorry I see that I did not put my name earlier!

[Lure2]

Hi,

Welcome to this friendly site! I live in Sweden and I read a lot here and sometimes I answer if I think I can contribute with some positive thoughts or medical advice but as we are no doctors we can only talk for ourselves.

I hope you will find this site useful for yourself. It has a very good reputation I think. In Sweden we have nothing at all. When you have this illness you can feel very lonely and the doctors do not know what APS is. There are some very good books about APS on the Foundation here. I have read 6 of them actually. Hope you understand my English.

Take care and thanks. Kerstin in Stockholm

[catno1 in reply to Lure2]

Hi, nice to meet you!

Yes, the site is good. It's helped me through many bad times over the years, especially reading comments from others, their thoughts and advice. My Lupus and APS have been having fun bouncing around me recently and so it's been a long winter. It cheers me to read others ideas, and on bad days does take away some of the loneliness. Due to a lack of understanding of APS in my area I had to seek the advice of my previous Consultants in England recently which has been frustrating. Thankfully my local Doctor is good here in Spain but my Consulant has no idea what APS is, something I found out only last year which was frightening.

Your English is great. Thanks for saying hello.

[InSpain]

Hi! I'm English but live in Spain. Welcome to the site. xxx

[catno1 in reply to InSpain]

Morning! Many thanks for saying hello. The site is very good, I've browsed it many times. It's helped me through a bad few months recently so thought it was time I actually logged in and joined. Been reading so much outdated info re health care here, people seem confused re how to swap from England to Spain. So many English seem to have headed home in the last few years from my area I'm starting to feel like a foreigner again here. I'm in northern Alicante. Interested to know about anyone else's experience here so please write back when you have a mo. Again, thanks for saying hello!

[Andrewl]

welcome, I hope you find everything you need on this fantastic site to help you. If I can, I will

[catno1 in reply to Andrewl]

Morning! Thanks for saying hello. The site is good, I've been using it for some years now. I was diagnosed in 2005 with Lupus & Hughes so it's been very helpful. I've read many posts and it's very interesting to see others comments, and how they deal with the everyday problems. Been through a bad patch recently and climbing up the slippery slope out so thought it was time I found some friends. Nice to hear from you, again, thanks.

[Andrewl in reply to catno1]

A pleasure. I was diagnosed in 2002 with hughes', and they have recently been swithering with lupus. In a dark place myself at the moment, but trying to manage it all. This site really helps. Glad to hear you are feeling better about things now, and we are always here or hereabouts

Andrew

[catno1 in reply to Andrewl]

Sorry to hear you're having a hard time. One of the best things ever said to me was on my day of diagnosis, 12th Dec 2005 (can't forget!). I'd never heard the 'Lupus' word before even, and my Consultant told me to read as much as possible so that I wouldn't be shocked in the future. A very hard comment and frightening at the time but now I'm grateful he spoke those words. I did read, and although at times, recently even, I have found it hard, diagnosis was a relief. Lack of knowledgable medical care recently has been awful, but it has made me realise I've read enough, as well as learnt over the years how to deal with a great deal myself. Best wishes to you, keep strong!

[Andrewl in reply to catno1]

Thank you, I wish you all the best also. I shall try to read a bit more about it. Good advice.

[catno1 in reply to Andrewl]

I should of said earlier, my name is Sue/Susan, whichever you prefer. I'm no expert, we are all different, but am also glad to lend an ear on site if you need. My diagnosis was sound, through testing and my whole history. It could of happened, diagnosis, a year earlier but sadly I was let down by poor care and took myself to a better hospital. Thankfully! All the best. Time for my warfarin munch. (Lupus UK site is good, but I have learnt more from the American sites!)

Sue

[Andrewl in reply to catno1]

Thanks Sue. Here for you also. Take care. You know where to find me

Andrew

[salva76]

Hi i live in jijona.close to denia.i got saf.i had embolism pulmonary.i had treatment with xarelto since may because my Inr, was mad, so high so low, now i got

Headache, lost memories, neurology problems,....i am trying to find a especialist saf doctor, in spain, but i dont find.i keep contact with more saf patients here in spain and we are trying to create a new spanish saf foundation.

If you like we can meet for chating and try to help us .please contact to me on my mail [e-mail] or phone me 686786225

Sorry my english is poor

[catno1 in reply to salva76]

Hola!

Your English is good - my Espanol is bad, but I try. Your problems sound very hard for you and I am very sorry to hear them. My hospital (Hospital de Denia) have no experience of Lupus or APS. My INR was low last year, and they blamed me for not taking my Warfarin - it was then that I realised they did not understand Hughes Syndrome. So please believe I understand your problems.

If you search 'Spain' on this site you will be an entry that gives the name of a specialist. I saw it myself a couple of days ago.

I have recently had a bad time with the Lupus and Hughes and like you am frustrated. I am not an expert, or a Doctor, but do have some years of personal experience so, yes, I will contact you soon, I promise. We need to get some help here.

My name is Sue or Susan, whichever you prefer. Thank you for contacting me.

[catno1 in reply to salva76]

I forgot to say, I live between Els Poblets & Vergel. We may live closer than we know!

[salva76]

yes my name is salvador i am male 37 years old

we are one hour driving, i usually go to benidorm or calpe every thursday because i work like a rep,,maybe if it is not a problem for you i would like to meet you and chat for a while to see if we can reach a especialist here who control us.

now i am having hydroxyclorina DOLQUINE ,but i dont feel better.

please send me mail to [e-mail] or call me 686786225 to arrange at meetting

thank you

[catno1 in reply to salva76]

Hi Salvador,

I understand, I promise. I also take the same medication, as well as prednisona. I was diagnosed in 2005, in England and received very good treatment.

A recent 'flare' in my SAF - I woke with a migraine, it lasted 36 hours. Violent vommitting and now a very swollen Pancreas! My local doctor is good but I am being supported by my English Haematology Consultant in Enlgand by email because of the lack of understanding here! In the UK, we 'self-test' - use a machine to test our INR from home. If the UK hospital I was with were not helping me now I would have had to return to England which makes me angry as Spain is now my home. Please, forgive my poor Spanish - I spend a great deal of time at home, and am ashamed at my lack of language skills! I will ring you shortly.

Sue

[catno1 in reply to catno1]

Buscar - apsaction.org

Munther Khamashta is the doctor that is recommend - he will know who to contact in Spain and help us.

I will contact him also.

My mobile is 682 464 640. Text, call, if you need support. I look forward to meeting you.

Laugh with me, do not be scared - 11mg a day! It was good to speak with you.

Sue