Newbie needs advice

[Siouxsiesioux]

Hey all 💖

So, I've classically been misdiagnosed with fibromyalgia after 7 years shuttling back and forth to gp. Been served anemic for two years just palmed off with iron tablets. Have so many symptoms of lupus, but only realised when I logged onto gp records online to see that my latest bloods show first states of liver and kidney failure. Considering I live a health lifestyle I was shocked. I don't drink, smoke, eat healthily, exercise etc etc. My bladder prolapsed seemingly out of nowhere.

And then I noticed, looking at bloody tests from last year that there was a double strip ant dsdna test that came up positive. It said patient told on it but I was confused bc I've always been told my bloods are normal. Anyway, Googled what that test is, realised it is lupus and my life makes sense. Its an overwhelming time.

I'm going to have to wait another 6 months to see a rheumatologist again so considering booking private this wk and have done another doubt strip rest privately yesterday. I'm just wondering does anybody know how expensive private treatment is until I can get in the nhs?

Also, medication advice bc I have early stages liver and kidney damage (possibly type 2 diabetes 2, waiting results!)

I know that diet is pretty important so I've been studying that intensely and supplemrt s.

Any and all advice on rhe above welcome. I've got a lot of work to do it seems!

Thank you xo

[Siouxsiesioux]

I am sueing for medical negligence... it has been awful. I'm emotional and relieved to be finally getting answers.

Thank you so much for the link... super helpful 💖💖💖

[Graystar]

I’m so sorry you’re being given the run around and not been communicated with properly! It sounds such a familiar story and it’s just plain wrong.

As for going private just google Rheumatology specialists in your area and it’ll come up with a list and also how much a consultation costs. You can select the one you like the sound of best. They usually fit you very quickly, within weeks rather than months.

I hope you manage to sort out a treatment plan quickly! Take care

[michaellasmith Administrator]

Hi Siouxsiesioux,

Welcome to the LUPUS UK Community Forum, I'm sorry you have been through such an ordeal over the last 7 years! I am glad to read that you have managed to find a private specialist and hope you will soon have answers!

I have attached a link below to our blog, which discusses preparing for your medical appointments, which you might find useful before your upcoming private appointment -

lupusuk.org.uk/getting-the-...

If you need any additional advice or just a chat, please call our helpline on 01708 731251, which is open Monday to Friday 9am until 5pm.

Warm regards,

Michaella