Can anyone recommend Professor Munther Khamashta from the London Bridge Clinic?

[InSpain]

Hi! Can anyone recommend Professor Munther Khamashta from the London Bridge Clinic? I need an urgent assessment of my APS to help 'educate' my doctor's here in Spain. I would be grateful to hear of anyone's experiences and/or opinions. Unfortunately, Professor Hughes is not available until January 2013 and I can't wait that long. Thanks!!!

[MaryF Administrator]

Yes a very excellent choice: Also here is a film of our patient's day with him talking, and you can also furnish your medical staff in spain with papers he has written or co- written off the Hughes Syndrome Foundation website.

youtube.com/watch?v=CFi9KpK...(Not working as expected?)

All the best, Mary F

[InSpain in reply to MaryF]

Thanks Mary. It's always good to hear of other people's experiences/recommendations.

[InSpain]

Thanks for the recommendation! I don't mind the accent at all - my husband is Spanish and I understand the Prof is fluent in Spanish so even better for me as my hubby doesn't speak much English at all!!!!!! I feel more confident to travel to see him now. All I have to do is to get my INR level high enough to fly first as I'm just starting to recover from stroke number 2.

[Suzypawz]

Hi I've heard he's very good.........a few on here will quote that I'm sure good choice I would think if you don't get Prof' Hughes himself!

I am only on NHS so I don't get to chose but I hear good things about him often so he would be one I would consider myself if I could.

All the best with your appointment x

[InSpain in reply to Suzypawz]

Thanks Suzypawz xxx

[ltespain]

Dr K is responsible for the fact that I am back on my feet and going strong and also have 2 children thanks to his 'educating' my care team here in Madrid. He's been involved in my care for the past 15 years and it is with regret that he can't continue due to my own circumstances.

He's a fantastic dr who listens and sees the whole picture and the added bonus of his Spanish knowledge and the fact that he travels here on a regular basis and knows all the key medics here to do with APS means that he may give you additional benefits of recommendations etc.

Where in Spain are you? Let me know while you are waiting to be able to fly if I can help in any way

L X

[InSpain in reply to ltespain]

Thank you so much for your comforting comments. I live about 40 minutes away from Valencia. The reason I want a second professional opinion is because I came out of hospital last Friday after a four day stay with a referral to see a psychiatrist because the Neurologist thinks that having an INR of 1.2 has no relevance what so ever to the fact that I am now totally paralysed down my right side and need to use a Zimmer frame. I think his words were, and I quote “You’re having a mid life crisis, you are such a nervous person aren’t you!” He keeps telling me that there is nothing organically wrong with me which makes me smile as both Professor Hughes and D’Cruz made my diagnosis of SLE (Lupus) & APS in 1992! I really don’t feel that their diagnosis’ can be disputed, do you?!!! I cannot tell you how much fear I feel at the moment with these problems – So that’s why I am going to go to London when I have recovered sufficiently so that I can get the advice and treatment I so need.

MA xxx

[ltespain in reply to InSpain]

Ahh the wonderful Spanish drs - my first specialist here, recommended by Prof Hughes (he also diagnosed me) decided that I should be admitted into psych ward after I refused to wait a year to start warfarin (or sintrom here) so obviously I was just in fact stressed as the diagnosis of APS, SLE and Sjogrens was totally wrong.... Fortunately the psych declared the other specialist mad and not me with a quick review of my notes so didn't have to stay in the unit!! Was all very scary as was also walking with sticks etc at the time due to TIAs....

Go get the back up documents from Dr K and also his opinion of some specialists that might be worth considering using. I went to one in Valencia that is good with APS but would have to search for the name - I was living in Gandia at the time. I really liked hiim though because he told me to come back to Madrid to have my second child as he didn't trust that there was enough knowledge in Valencia to keep me safe.

Take care and keep positive

L

XXX

[InSpain in reply to ltespain]

I shall keep positive. As you say I need some back up documents from somebody reputable. My husband is from Oliva and we live quite near to Gandia but Professor K would be ideal as my hubbie doesn't speak much English. Hopefully, I will get to through all this in one piece. It's good to know that I'm not the only person here in Spain who has experienced crappy treatment! Having said that I've only found a problem with the Neurologists. My Reumo, Cardio, Physio, Orthapedic etc are all fab.

[louise78]

Dr khamashta is a brilliant doctor, he is kind and caring and really knows his stuff. I don't know what sort of state I would be in without him! X

[InSpain in reply to louise78]

Great to know - thanks a lot xxx

[Annslack]

So sorry you have been treated like this. I have met with similar attitudes and it was such a relief to see Dr Khamashta. He is very used to dealing with these issues. He has great expertise. And does understand how hard it is for patients when doctors don't understand. I wrote out all my concerns and questions a copy for me and one for him. He was very positive about that and I found it helped me to make sure I covered my concerns. He actually apologised for the way other doctors had treated me and said pastients shouldn't be treated like this. Ever since seeing him I have had so much more peace of mind I lnow that I can say I am his patient and if anyone googlkes him they willl be in no doubt about his status in this field. Best wishes

[InSpain in reply to Annslack]

Sounds like a great tip to write everything down. I'm going to take copies of all the times I have been treated in accident and emergency too. (We get written reports to take away with us each time we are treated here in Spain.) Thanks for taking the time to answer my question. xxx

[InSpain]

I totally agree with you. Without sounding too dramatic I really feel that if I don't make it for an appointment in London they could end up killing me.

[MaryF Administrator in reply to InSpain]

Why so many neurologists can't understand either inflammation or sticky blood effecting the brain is beyond me! Try not to be downhearted so many have had these dinosaur attitudes... We should really have a learning programme just for neurologists! <br style=""> Mary F x

[InSpain in reply to MaryF]

I must admit I did feel downhearted but with the overwhelming response I've had from everyone today it has certainly cheered me up somewhat! As for the dinosaur attitudes I totally agree. What I think is so absolutely shocking is that they would prefer to risk a life rather than listen to a ‘mere patient’ who probably through their treatment and experience of the illness could actually teach them a thing or too. The phrase “Your life in their hands” certainly comes to mind at the moment! Still I am now clear what I need to do and shall follow it through. Thanks for your comment and support Mary F xxx

[MaryF Administrator in reply to InSpain]

Cheers! M x

[Danimgw]

Hi InSpain

My specialist is spanish and he is good friend Dr.Khamasta.

His name Dr Gil Aguado he is In Hospital La Paz, Madrid.

I highly recommend him, he the equivalent of Dr Hughes in Spain.

If you get in contact with him tell him that Daniella Gonzalez-Weil recommended him.

Keep us informed

Dani

[InSpain in reply to Danimgw]

Thanks for the info - I'll certainly do that when I've recovered a little more. Do you know if he does private consulations because with all the health cuts here at the moment I'm not too sure if I'd get a referral? xxx

[Danimgw]

La Paz is a public hospital. Puedes llamar y pedir que te comuniquen con medicina interna, es donde el doctor Antonio Gil Aguado se encuentra.

Suerte,

Dani

[InSpain in reply to Danimgw]

Gracias Dani. Lo haré. Yo puedo coger el tren desde Valencia a Madrid (90 minutos), será mejor para mí que volaba en el momento. Un beso de mi parte.

[ltespain in reply to InSpain]

He does private clinics as well - I would have to double check the details but used to be two afternoons a week.

L

[SueLovett]

Hello,

I can thouroughly recommend Munther Khamashta. He is my consultant and I do not know what I would have done without him and his expertise.

He used to practice in Spain.

If you ring the London Lupus Centre the ladies there can give you all the information you need. I know he is there on Thursday mornings.

Let us know how you get on?

x

[InSpain in reply to SueLovett]

Thanks Sue xxx

[kathyD64]

Hi i am so glad i paid to see prof K now i am under him at St T's under the nhs. To save time and my memory i did email his secretary and he said that was very useful because he could go through it at leisure before seeing me.

I highly recommend him and wish you the very best - weird i got diagnosed and had my case published by a neurologist back in 1991 yet i have been under a neurologist recently and because my mri post tia's had not left a stroke or evidence his attitude towards me changed! he wrote i didnt have a vascular event despite my symptoms that included left bundle branch occlusion! we do seem to struggle with neurologist!! They just dont seem to understand how sticky blood can cause transient events it seems they like concrete evidence not patient history or visible signs such as a weak arm and leg!!! hmmm one of them said it was anxiety as many of us here to often get told - i had an inr 1.4 felt awful and was told i was adequately anti coagulated by an old GP!! we can only hope the future will bring much needed cover of this condition in the media and get well known as readily as ms or parkinsons!!!

Hope you get your inr at a level safe for you and can travel soon. love kath xx

[InSpain]

Thanks Kath for your encouraging reply. My INR is currently at 1 and I feel really ill although have been assured that this is fine, and to stop 'fussing'. Interestingly, this comment was by a neurologist too!!! So my husband and I are thinking of travelling overland by car, although, I would love my INR to go a little higher first so that I can cope with such a long journey. We have lots to think about. xxx

[InSpain]

Hi ellen29 thanks for your reply. You've hit the nail on right on the head! I do want a change of Doctor however this isn't as easy as it sounds. Hence the visit to The London Bridge Clinic - I need somebody with enough expertise who can speak to them on my behalf and make them sit up and listen and educate them too. It's the lack of knowledge which I find to be most frightening and at times frustrating. xxx

[Hidden]

"What is it with Neurologists? Almost everyday on here there is a complaint about one and their treatment of patients with APS, that is surely something that needs to be addressed before something tragic happens."

You say that again!

[Lure2 in reply to Hidden]

I have had at least 2 negative experiences since 2002. They do not understand how our sticky blood reacts on the brain. Have they listened to you?

Kerstin