Lupus diagnosis help...

[Dwarman]

So I've been unwell for 3 years and I'm still not fully diagnosed, originally diagnosed with fibromyalgia but specialist say I have something else. Have had positive ANA result but not during recent testing. Smooth muscle test positive to. GP is certain I have lupus but can't do anything until rhuemo see's positive test results. I also have osteoarthritis and a problem with my joints clicking out of place. I have had issues with some of my organs to; bladder, liver and pancreas mainly. I have no quality of life and am on a lot of pain relief, my health just keeps decreasing and decreasing. I am 32. Is it worth paying to see a lupus specialist privately?? If so where ??

[driven]

Hi Dwarman

The specialist is key. It is worth seeing one privately in my view if it is the only way to get diagnosed but you will need a GP referral anyway and I can't help feeling that if you GP is sure you have lupus then they should refer you to a lupus specialist anyway. But private is quicker they give you much more time and you can PICK your consultant having done your research. I only saw a consultant privately once when the rheumy at the local hospital was being useless....post diagnosis by many years. Wow in one private consultation I got more advice for my GP on tests and therapies that i should have than I had in years. Now I see that same guy at the city hospital on the NHS and although I don't always see him personally my care has hugely improved and my GP is happier too. Good luck ☺

[Dwarman in reply to driven]

Thank you for your reply. My GP says the lupus specialist won't see me until I have a positive ANA, so Im having my bloods done regularly til then. I have had two positive ANA results but over a year ago. My rhuemo also doesn't think it's fibro and he is constantly running tests. I feel like I'm going round in a massive circle and getting nowhere. My face is the main give away for why they think it's lupus.. I have the butterfly rash very badly. My rhuemo thinks it's auto immune if it's not lupus but isn't sure which one. I had some major problems with my liver a few years ago and my dad died of liver failure so the rhuemo was going down the line of an inhertied of auto immune liver disease but for the past year and a half my liver has been okay again. On more than one occasion my rhuemo has said that I may end up with a disease named after me.. I am hoping he is kidding. My results and symptoms seem to match quiet a few different illnesses but not one exact one. Frustrating !

[Paul_Howard Partner LUPUS UK in reply to Dwarman]

Hi Dwarman ,

Diagnosis can unfortunately take a long time if you do not show clear clinical markers to fit into a particular slot. Have you been started on any treatment to see if it helps to alleviate your symptoms?

A second opinion from a rheumatologist who specialises in lupus may be worthwhile. It may be an idea to push this with your GP again. What area do you live in? I can provide you with information about any specialists we may know nearby.

[misty14 in reply to Dwarman]

Hi dear man

Sorry to read you are having diagnosis problems and your health is deteriorating!. I'd just like to pick up on your comment that you've symptoms of many illnesses. I too are similar and have a diagnosis of UCTD which is undifferentiated connective tissue disease. It covers Scleroderma, RA and lupus, our bodies can't decide which to be so is a bit of all. Treatment is the same and I've had this label for thirty years. You can go on to be diagnosed with one illness if sufficient symptoms develop and bloods change but mine haven't . I agree with your previous replies that a private consult with a Rheumy would be good. Hope I've helped and you get the help you need. Keep us posted. X

[Dwarman in reply to misty14]

Wow thank you for the reply... I have never heard of that. It definitely sounds similar to what I've been going through. I will mention it to my Dr. Thanks again.

[misty14 in reply to Dwarman]

Hope you see the specialist soon dwaran. Good luck.

[Dwarman]

Hi I am in Blackpool. Medication wise only pain relief and anti-inflammatrys plus amtriplayine,anti histamine and have tried gabapentin. I am waiting to see pain clinic again.

[Paul_Howard Partner LUPUS UK in reply to Dwarman]

I believe your nearest lupus specialist centre would be the Kellgren Centre at the Manchester Royal Infirmary. A couple of the specialist rheumatologists there are Prof Ian Bruce and Dr Ben Parker.

In some cases when a connective tissue disease is suspected, some consultants prescribe hydroxychloroquine to see if it can help alleviate the symptoms. It may be worth discussing with your consultant whether a treatment option like this may be considered.

[Dwarman in reply to Paul_Howard]

Thank you I will ask about that. I appreciate all the advice.