I have appointments with both profs. My first is in Aug. Its such a relief that I will get answers from people who specialize in APS and even if I get told I don't have I will have peace of mind at last. I have spent the morning contacting different hospitals and have been sent electronically the forms I have to fill in to gain access to my medical records at the hospital (this may take up to 40 days I am told). I am also asking my G.P surgery to do the same. Not sure if I should be asking for everything though??
The first neurology appointment in Manchester hasn't been set yet I have been told and I have left a voice message at the neurology dept asking them to contact me r.e my scan image and report. I feel better now I have set appointments with Prof Hughes and Khashmata.
Do you think it would be a good idea to ask my g.p to test for thyroid issues, low platelet count, Vit D and B6 and 12 deficiency, before my visit to London, or just wait to see what tests they would like?
Thank you from one happy person x
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crista1
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Hi, yes to the tests above, also add in iron test also, I have all this tested and for my children before any visit to the consultant! Which reminds me I must do them all. MaryF
OMG!!! Congratulations on your app with the holy Grail! Did you insist on seeing him? I would love to have sometime with him? Bursting with questions. You must let us all know how you get on. Good luck. Jo :0) x
Thank you. I'll let you know how I go on. I explained I was now nervous of seeing doctors who didn't know anything about APS after my experiences so far. I just want answers and a yes or no to if I have APS or not and for me paying to see the Professors will get me the answers quicker and I know I will be seeing the best x
I don't blame you, I really hope you get all your questions answered.. I am reading sticky blood explained at the mo you must read it, it will help and prob answer so of your questions. Ps can I be rude and ask how much it's costing? Jo x
Not at all being rude Jomack. The initial appointment is £220 and £195 for further apts. Various tests will cost more, so best to have copies of various blood works had so far with scans etc if you have them. Bernie x
Please post your experiences regarding your visits. I'm in the US but often thought of going to see them because I know it would be a wonderful experience. My insurance would not cover the visits but I know it would be worth it.
Hi Loretta. I will post. I have received my appointment letter today. Basic Lupus bloods that need to be taken would cost £430, if an injection is needed it will cost £100, other costs to factor would be additional bloods, other tests eg x-rays. Trying to gather all information together. I have sent off for all my medical records from hospitals and will do the same to G.P surgery, which will hopefully help.
For me it is worth it for the peace of mind. I hope you manage to see them in the future.
The weather here right now is great--low humidity and enjoying every minute of it. Last week the humidity was high an it was miserable and our weather has been very unpredictable with last winter a horror so I just enjoy being outdoors when it's beautiful. Sorry you don't have insurance but I know it will all be worth it for your peace of mind.
It's funny because the weather forecast for the weekend here was sunny and wonderful but it's been consistently cloudy but nice and cool. Enjoy the day.
Wow...!! That's fantastic.
My hat's off to you. May I ask politely as to what is the rationale for this joint consultation?? I have been thinking about this for myself but did not wish to ask in case I would be told, "why on earth..... you need to have two instead of one..etc etc!)
To be honest, I always wanted to see Prof H to begin with. He had a long waiting list and saw someone else...
Hi Omega. Thank you. It's not actually a joint consultation. I wanted to see Prof Hughes but he as got a long waiting list, hence the first appointment. I am trying to collate all my past medical history notes,scans,bloods etc via other hospital's and departments but unsure if I will have all the info by my first apt, so by my second apt everything should be in hand. Having said that if I get confirmation of APS I may not need the 2nd apt in November!!
It was discussed and suggested on the phone when I spoke to London Bridge.
Take care x
Many thanks crista, wishing you all the very best with Prof H..! He looks fantastic.
Thankfully, it's rainy up here as well..it was sweltering yesterday in the "down south"...! (glad to be back in the North!) lol No offense intended..x
I had my consultation with the lovely Professor K. He diagnosed me with APS. I will need to visit him again soon for a range of tests but firstly a visit to my g.p. I would recommend anyone who can to pay privately for their initial appointment or ask their g.p for a referral. It is the best money I have spent. I now have peace of mind and know I haven't been going mad!
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St thomas's. Hughes consultant. Positive appointment.
Been to see Prof Khamashta...
To Hughes or not to Hughes
A prof.or dr. Specializing in Hughes syndrome
Hughes specialist at London Bridge Hospital?
