Do you get called back to LondonLupus after 1st appointment?

Just wondering if someone can tell me a bit more info please. I have booked an appointment to see Dr Khamashta in February, it's my 1st appointment so I'm expecting blood tests, urine samples, weight etc....but what happens after this?? Do they send you home and then get you back in after a few weeks for a follow up appointment once tests have been evaluated etc? What's the general process?? Just wondering as obviously it all costs money, especially coming from the north east travelling to London etc xx

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16 Replies

  • I had a follow up a few weeks after my first appointment with Prof Hughes. xx

  • Thankyou Manofmendip, may I ask if follow up appointments are the same fee as the initial one? I feel this is going to cost me a fair penny or two in travel costs coming from Newcastle. Xx

  • Hi, sorry I've taken a while to reply. I can't remeber the relative costs of the appointments, as it was 12 years ago, sorry.


  • Thank you Dave, I expect I will just have to manage, I know its going to be worth every penny in peace of mind xxx

  • Hi if you get a follow up appointment. When i go to London I use Super break which includes a two or more nights stay which includes train tickets. This works out cheaper than paying the full fare on the train. Hope this is of some use.

  • Thats really helpful Bernie I will certainly have a look at Superbreak!

  • I saw Munther Khamashta at London Bridge, initially, and had tests etc. I then went back after month. Second appointment was about 200 pounds as no tests.

    You have picked a brilliant doctor. He told me on first consultation he was 95% sure I had Hughes and confirmed a month later.

    Take as much info as you can inluding recent blood test results, copies of scans etc. Also write doen as much of your history as possible and give it to him, he likes this.

    I saw him yesterday and I can honestly say he is the kindest, most caring doctor I have ever had the pleasure of seeing. He treats you with respect and dignity, wish there were more like him xx

    Let us know how you get on xxx

  • That's very reassuring to hear Sue, really pleased you are happy with the care you have makes a huge difference to stress levels when we are spoken to in a kind manner and most of all listened to without being brushed off. My ophthalmologist and rheumatologist are both lovely people but I feel unable to challenge my rheumatologist as I feel they are supposed to know about APS and as she has already stated my results are negative then how can she go back on that just on me challenging has said they're the experts in APS but obviously not expert enough as she has not acted upon the fact my igg and igm have come back borderline positive....and I believe they would be classes as moderate positive at the LondonLupus combined with the clot in my eye of course. I feel sometimes if you don't tick every blood test then they sign you off...they weren't even going to repeat the first one....and even I know they're supposed to do it twice. Sorry I am on a tangent xx

  • You are going to the right professionals. I Seronegative, but I have all the symptoms. You are right to question, as it is your body and you know how you feel. Good luck on your appointment.

  • Thanks Bernie, Ive had a chat with hubby and he agrees it's best not left to the unknown aswell x

  • all my results were sent to him before my appt by my gp,but he did them all again and asked me to trust him as id lost faith in the system,and was very down about failing tests and being made to feel like a hypochondriac, they came back positive with him as he knew what to look for,and found another stroke in my mris that had been missed-i was then given a formal diagnosis and im now under him after the follow up appt and i see him twice a year-he did say that as i live far away if i need to see him less or more he would be happy with leaving it to me to decide. Lovely man-he even shook my usbands hand and hugged my daughter and i came away in tears of relief - your in the right hands xx

  • Ahh thank you Emma, you must have felt like such a weight had been lifted, I too feel like a hypochondriac because the symptoms and minor ailments I have are so non-specific that you just would never link them to anything, I even said this to my ophthalmologist how I would never go to my gp with all of these minor things, like my fingertips go blue in the cold, my memory is shocking, etc. I guess it will be the best money I can spend getting some peace of mind xxx

  • Hi I totally agree with with what Sue and others have said about Dr K. He is a. very caring doctor. He did say you can get results by phone but I really felt I wanted to go back and see him. If you belong to a hospital fund,they will pay half your appointment fee. If you are not already a member there may be a waiting period before you can claim. You have to work out if its worth the monthly fee in the long term.

    My trips to see Dr K transformed the way I felt. I was always in dread of more trips to hospital and being viewed as a time waster. After getting a diagnosis from him I have felt so much safer.

    Let us know how you get on.


  • We are going to try and make a break out of the trip to London, it is going to cost as much in train tickets for myself and my hubby as it will to take all 3 children by the time the family railcard takes a discount off. I can go to see Prof Khamashta and they can go for something to eat. We can go sightseeing and try to find some free/cheap things to do..ust trying to see what is around and about that area where the Lupus centre and premier Inn are -which we are going to hopefully stay at...I've never been to London so havnt a clue. If anyone has any tips or recommendations that would also be great x

  • All the museums and art galleries are free. The Natural History Museum is great for kids. Enjoy your trip. Xx

  • Thankyou Sue, will save me a fortune finding free things to do, we are lucky to not have fees for museums. London isn't somewhere I'd have ever fancied but I'm actually quite looking forward to it now xx

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