Am I right in thinking its proff Hughes at st Thomas Hospital, London Bridge that specialise's in Lupus and connective tissue disease?

[Jo883]

From what I gather most of you have been to see this guy and I'm just wondering if I should try and squeeze in a private visit with him whilst waiting to see neurologist. I'm not sure I can just wait around waiting for things to improve! X

[MandieR]

there is a prof Hughes there, myself, I see Dr Sanna, who is brilliant!!!!!

I would highly recommend doing exactly that if you have the chance, they are the first team I have seen in 12 years that actually seemed to know what they were talking about.

Good Luck xx

[daisyd]

Hi prof Hughes, found the condition Hughes syndrome, Antiphospholipid syndrome, sticky blood, several people who have Hughes syndrome and say he is excellent.

I am sure he knows a lot about Lupus too. Others will tell you who is the person who is best for treating, Lupus. I think it's less expensive if you have bloods done under the Nhs

All I can say is in my experience Neurologists are the very worse you can see, I maybe wrong,

Good luck

[Jo883 in reply to daisyd]

Hiya daisyd

Thank you for your reply, I've been seeing the same names crop up on this forum and thought if everyone here is going and getting help then they must be doing something right. I have to say I agree with you regarding the neurologist - I saw one years ago when I was quite young as I had unexplained fits and actually some of the symptoms I still have now! He was a rude and arrogant man who diagnosed me as having somatisation disorder after spending 5 minutes with me - he was private, at the time I was so ill I was in a wheelchair and couldn't speak very well and he kept almost shouting at me to get answers - I told him with what little strength I had - that he was to speak to me with respect!! I then got the somatisation disorder label and that has done nothing but close doors for me ever since! It has been nothing but a bone of contention for me. I never believed it but I thought at if it was something I had done to myself I was just as capable of undoing it!!! Here I am still looking back over my history 22 years later, now learning it very well fits with Lupus - although I can't say for sure as sero negative! I have all the arthralgia, hair loss, fatigue, livedo etc etc - just had fresh set of bloods done so be ready for neuro - but I'm older and I'm getting slightly pi...d off with being treated badly so he better watch himself, I have always believed manners cost nothing, I consider myself to be relatively calm and patient. The quickest route to seeing my sparks fly is by telling me its all in my head!!! Lol!!! Thks for taking time to reply xxx well wishes

[lupienat]

Hi Prof Hughes had worked most of his medical career with Lupus, he used to work at ST Thomas's lupus unit for many years.Through this career he discovered "Hughes syndrome" hence it being named after him. Personally I wish I had seen him years ago, he is so knowledgeable not just about lupus or Hughes but most autoimmune diseases as they overlap. If he dont know he will be honest. Or will point you in the direction of the best specialist who can. You can look him up on google and find lots of info. you can take your blood results and scan with you to save paying again. He is the first doctor I have had an appointment with in 14 years for lupus who told me the most in the hour appoitments than most of then put together!!! He gets really booked up as people come WORLDWIDE to see him. But thought you might be lucky and get a cancellation or something very soon with his other staff there. Who are all trained under Prof Hughes xxx

[DebbieC]

Hi, Prof Hughes is at The London Lupus Centre, London Bridge. This is a private hospital. He founded the unit at St Thomas' years ago, but left there a while ago. St Thomas' Hospital takes NHS patients that have been referred by their GP. I have not been to them but was told it can take months to get an appointment as they are so busy.

[Hidden]

Dr D Cruz is at St Thomas's and is also at the London Bridge Hosp. I opted to see him privately 13 years ago after 4 years seeing a consultant locally who admitted he did'nt know what do do with me. Dr D Cruz diagnosed Lupus Sjogrens and vaculitus on my first visit.

I still see him once a year. £190. Worth every penny.

[Dumpypug]

Hi,

I strongly reccommend to anyone who is struggling to get themselves to London!

I saw prof D'Cruz privately and now on nhs, it is the best money I have ever spent, if you cant get to see prof Hughes please go and see prof D'Cruz he is an amazing man

Good luck

x

[Hidden]

My consultant is Dr D'Cruz at St Thomas's Hospital, he is totally amazing, he diagnosed me in 2009 when my GP couldn't even find out what was wrong with me. I will totally recommend him. I only see him twice a year now and sometimes I see him on emergency if my symptoms gets worse.

[Jo883]

Thank you for all your replies its great to have like minded people to chew things over with in the never ending battle of fighting for your health and to be heard! love and light xx