Finally an nhs appointment to Guys Lupus clinic!!... - LUPUS UK

LUPUS UK

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Finally an nhs appointment to Guys Lupus clinic!!!!!

Lisalou19 profile image
Lisalou19

I literally could cry, after going round and round in circles for years, to:

Dermatologist, rheumatologist, gynaecologist, hormone specialists, allergy specialist, mental health specialist, you name it I’ve been there with little help along the way. My saving grace this year is my gp finally prescribed steroids and I’ve managed a better life, not a perfect life.

I paid to see a specialist at the London Bridge lupus clinic , thinking I may still be in the wrong place searching for the answers to all these horrible symptoms that are slowly making my life at times impossible. This doctor immediately wrote to my doctors for a 2nd opinion referral, which has finally been agreed and an appointment booked.

It seems this private route is the way forward if lupus is suspected. So many years I’ve suffered, due to the lack of medical knowledge from all the specialists I’ve seen.

I’m staying positive that finally I will get the answers. Lupus awareness seems to be a grey area within the medical industry and yet so many people are suffering!!!! I hope one day when I am strong enough I can make a difference somewhere

10 Replies

I hope you get the answers you need.I just wanted to say you will get there in the end.It took me 12 years, and four referrals to 5 rheumatologists to get an answer and some treatment, by which point I was really unwell and felt like giving up.But now having been put on immunosuppressants I am feeling better than I have for a long time so there is light at the end of the tunnel.I really hope you get the answers and help you need.Good luck for your appointment.Jane

Lisalou19 profile image
Lisalou19 in reply to jane1964

Thank you Jane, almost 15 years for me 😢 but the past 5 have been the worst since giving birth again In 2013. Im so happy for you that you finally got there in the end. hearing that gives people like myself hope!

This site has given me so much knowledge and given me the strength to keep fighting. X

Soooooo pleased for you

Fair chuffed! (as we say in Scotland) - well done for bearing up and sticking in at it all those years! Fingers crossed you'll be on a treatment plan very soon xxx

Best thing is to go private I done the same thing i suffered for years like a leaper a rash from head to toe that would not go I paid private and he said you need that many tests I want you to come back nhs it was the first step in the right track x

Lisalou19 profile image
Lisalou19 in reply to Ingerfoot

Sounds exactly the same as me. I’ve been everywhere and at times knew some tests were totally irrelevant, ie complete allergy testing, I still went so I could tick that off the box x

Ingerfoot profile image
Ingerfoot in reply to Lisalou19

Just stick with and tell them every symptom I remember my consultant always said we don’t treat blood tests we treat symptoms because my bloods always come back bad and I never put 2 & 2 together I would have symptoms then they would stop so I wouldn’t say about them (I’m not to bright) after about 5/6yr he transferred me to the rumey after I told them about the joint pain I think they was waiting for it x

Exactly like you..could have written this myself. Much love. Xxx

Hi I have a diagnosis of lupus / scleraderma and have been on steroids and methatrexate for 4 years . This last year has been hell , I feel so unwell all the time . Will be very interested how you get on at the clinic because my family think it's time to go private. Really hope all goes well and look forward to updates xx

Lisalou19 profile image
Lisalou19 in reply to samlewis67

Sorry to hear you are still feeling unwell even though you have medication. Maybe you should seek further guidance as you may have something else underlying that isn’t being treated. This diseases are so complex x

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