I have never been across the pond but am considering a visit to see Professor Hughes. I am about at my wits end. Any suggestions on where to stay...(not expensive) hotel or the cost of a consult is?
I am going to call tomorrow. I would value your thoughts.
Hi babe can't you get the name of a good Doctor from Doctor Hughes he must know of many I live to far from London if I was closer I would have put you up
Good Luck sweetie x
Aw...thanks Taffy....you are sweet. I will be trying to see Dr. Hughes hopefully. I may see if he has any contacts here in the states first...but I am deternined!!
THanks again Taffy
Why not try looking at the US doctors involved with APS-ACTION: theworldwaterproject.org/ap...? You have Mike Lockshin, Doruk Erkan, Jane Salmon and Tom Greco over there - I know they're all heavily into research but they do some clinics and must know of other physicians - the main centre currently seems to be the Hospital for Special Surgery based in New York: hss.edu/condition-list_anti....
It really is taking off in the US now - after years of being in the wilderness 
Hi Pumpkincake
Some good advice from the others on here above.
The APSFA people over in the USA will also have details of Dr's over there.
I see Professor Hughes and I do rate him very highly. I live in the west of England about 120 miles from london. When I go I drive to a town called Woking, in Surrey, which has an amasing train service into London Waterloo; fast trains about every 10 mins (journey time 25 - 30 mins). From London Waterloo you take the Jubilee underground line (eastbound) for two stations and get out at London Bridge (make sure you leave the station by the Tooley Street entrance/exit). St. Olaf House is oposite that entrance to the station. There will be hotels near Woking, I'm sure and I would try something like a Premier Inn. I beleive there is also a bus from Heathrow Airport to Woking.
I saw Prof Hughes for a follow up consultation last month and it cost £195 but a new, first consultation may well be more and he may want blood tests too, never cheap if you have to pay for them.
When you phone call +44 20 7234 2155 and ask to speak to Kim, she makes his appointments. Try to avoid getting an appointment during the period of the Olympic Games as the Jubilee underground line is a major artery for the games and will be a nightmare (clots, of people, the like even us Hughes sufferers never have).
I hope this is helpful and good luck.
Dave
Hello, the organization I have heard of in USA, is this one, they seem to have a wealth of information americanaps.org/ Mary F
This is just a thought!
The Doctor who is mentioned in another thread on here who is treating Venus Williams for Sjogrens Syndrome is based in LA. He is a Rheumatologist like Prof Hughes and also is an expert in Lupus, like Prof Hughes. It struck me that he too may have good knowledge of APS and if he did not he probably would have a good connection to somebody who did.
If I was in your shoes I would contact him as a start. You have nothing to lose other than the cost of a call.
Here is the link to his office.
I would recommend trying one of the docs above as I know them all and are very very good. Coming to London for a visit would be fun though- trust me I am on an extended holiday of sorts at the moment!!
If you are insistent on coming I hear the easyhotel chain is decent but very very tiny. Have stayed at Tune hotel but was a bit too small for my liking. they are very no frills hotels!! I have luck bidding on Priceline when I do stay in London.
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