[Ocean1]

Hi,
Im thinking of going to the Private London Lupus Centre for a consultation and to find out once and for all whether i have Lupus or not
My problem is, i have to get a referral letter from my GP, and am scared she wont do it, as i had all the lupus blood tests a few months ago and they came back negative. However i have since learnt that blood tests are not always positive and you can still have lupus, this is why im hoping to go to see a specialist at the Lupus Centre.
Any advice on how to approach my GP to ask her for a referral?!? I dont want to undermine her and i want to keep her on my side as shes been the only person to really stick by me through all of this :worried:
Also any advice on which specialist I should ask to see at the Lupus centre as there are a few there.
Thanks, any help greatly appreciated!
Bex x x x

 

[sarah-pearson]

Hi Bex, If its any help to you you can pay at The London Bridge hospital and most of the doctors you do not need a refer letter
I did this last year and it was one of the best things i have ever done. They really know what they are talking about !

Take care

 

[halfpintfl]

Hi Bex, I don't know how everything works in the UK, but
here we need a referral also. I would just say that you have been doing a lot of research about Lupus, and you have found that Lupus is never diagnosed by blood tests alone. Included in a diagnosis is the dr. looking at the patient's body for several visite, watching the color of the eyes, the fingernails, color and shapes od them, your skin, and much more. There are Many people on this Lupus site, including myself, that have been dx with lupus for years and years, and it was not all by bloods alone. Sorry to ramble on, but my answer is yes, please get a second opinion from a second (must be) Rheumatologist, you are not getting all the proper treatment. You need meds and proper following. PM me if you have more questions or need more help. Oh, most important;before yopu go to the new
dr. write down all of your symptoms,all of them, to give to the dr. Be well and keep posting.​

 

[madwife]

Hi Bex,

I would ring The London Bridge hospital, explain your situation and find out which Dr you would be under and whether they would like a GP referral. Have a look on the london lupus website - there is a list of the Drs who work there. I see Dr Tench but I bet they are all really good. It would be helpful to do this prior to discussing with your GP. You can then explain the referral process, which Dr you would like to see etc., to your GP.

I would then make an appointment to see your GP and talk to her openly and honestly - say that you have researched Lupus and have discovered that a diagnosis can be made in the absence of positive blood tests. Explain that you have spoken to the london lupus centre, tell her that you are willing to fund a private consultation as you need to know for definate whether it is Lupus or not. I dont think that this will undermine her. Im sure that she will be supportive and make a referral for you.

Madwife

 

[LolaLola]

Dear Bex,
Just wanted you to know I am still thinking of you and hoping it goes well.
x Lola

 

[Ocean1]

Hi, thankyou so much for your replies means a lot.
Thanks 'Madwife' for your suggestions, ive been in touch with the lupus centre and am waiting on a reply and then i will make an appointment with my GP.
Feeling really rough today, struggling to walk as legs keep giving way and feel very wobbly and wishy/washy
Thanks again for the advice
Bex x x x

 

[Ocean1]

Phew im so relieved, I bucked up the courage to go see my gp for a referal for the London lupus centre and she was fine and said it definatly would be worth going there to rule lupus in or out once and for all!
So as we speak she is writing me referal letter :rotfl: yipee i finally feel like im moving forward in my quest for good health! thanks for all your encouragment :wink2: esp LolaLola
Thanks again x x

 

[Lily]

Well done you! :thumbs:

It's hard sticking up for yourself with these medical professionals, but with diseases like this we really have to in order to get anywhere.

Good luck and let us know how you get along. :hug:

love
Lily

 

[LBH]

Hi Bex

Pleasure meeting you! I'm new here and really don't know much about London Health Care but can tell you my experience I had with Lupus. I had several test show up negative before I got diagnosed and they still come out negative. And I was walking around with CNS Lupus. I got so sick before they diagnosed me and ended up in a wheel chair and could not even put my nightgown on in the mornings.
Personally, I think those Lupus test are a joke. The doctors need them though in order to diagnose. Lets just say I suffered for 5 years seeing doctor after doctor and getting no answers. I finally found one doctor that did not give up me and they studied me good. Every week seeing him and then after two years of seeing him he told me I had Lupus.
The problem with Lupus is that it mimics so many othe diseases and the doctors have to rule out those first. Then when they suspect Lupus and know you don't have the other diseases they pretty much finally diagnose. But sometimes it takes years before they do that! There are several types of Mixed Connective Diseases that they have to watch for and some are worse than Lupus while others are not as bad. But each one has to be ruled out. Some medications they use for Lupus can aggrivate the other diseases and cause more problems.
Best thing to do is find one doctor and stick with them. You may get better answers by staying with them. I got angry at several doctors here in the US and went from one to another. And now after thinking back. I wished I would have stayed with the first doctor and let them evaluate me better. Probably would have gotten diagnosed faster! Now that I think back I see the mistakes I made! Hope you get diagnosed soon! Very frustrating not knowing the unknown. Been there and it was no fun picnic!