information request for Professor D’Cruz

[Mifford]

good morning everybody. Without giving a whole load of background info my lupus has become more active and the last 6 months I’ve been dealing with a herniated disc and trapped nerve in my neck. I discovered off the back of this that the last 3 years of phone appointments have been with a locum whose specialism is osteoporosis. He seems lovely but totally the wrong person for me to be seeing. I’m not on any medication beyond depomedrone injections when needed which has become more frequent over the last couple of years and I’m just being bumped around between departments as my clinical picture is unclear. Anyway to cut a long story short I have been given Professor D’Cruz’s name as a recommendation from a very good source. I saw Guys lupus team in the past but not his specific team and it led nowherether than me now having a diagnosis of a “lupus like” illness - all the characteristics of lupus, high ANA, positive lupus anticoagulant, severe photosensitivity etc but somehow not actually lupus but nobody can tell me the difference 🤦‍♀️ I am thinking that going the private route for an initial consultation in the hope I can then be referred to him on the NHS might be the best way to go but I’m struggling to find details about how to go about this. As I know many on here have followed this precise route can anyone advise how to go about this and what sort of cost is likely to be involved - obviously each case will be different on the cost side and happy to discuss that privately in messages but I’m just looking for a rough guide bearing in mind I can provide a fairly comprehensive record of my blood test results over a 12 year period. Any help greatly appreciated as always

[dg70]

I pay anything between £150 and £250 for between half hour to an hour. Don't get your blood tests done privately they can cost hundreds. Ask the consultant to write to your gp or give you a blood test envelope to take to your gp to get them done on the NHS. When you are finished going private, see your gp and ask for an NHS referral to a hospital you choose, if you can. Unfortunately the wait might be up to a year on NHS for first appointment. I've been waiting several months already. In the meantime I keep my private annual review with my rhuematologist until this is sorted. Hope that helps.

[Mifford in reply to dg70]

brilliant thank you very helpful. I’ve got a limited budget but that sort of level would definitely be within it. I think it might be time to give it a try x

[dg70 in reply to Mifford]

You may find you still have a couple of months wait but not as bad as nhs at the moment.

[Mifford in reply to dg70]

To be honest it’s as much about seeing someone with some authority to stop being passed around from department to department to delay actually treating me so time isn’t an issue. I emailed the, last week but not heard back so may try calling again instead. Thanks for the heads up though as always good to know

[Mifford]

Just as an update in case anyone follows this - I saw Prof D’Cruz a couple of weeks ago and he was really helpful, I sent him a huge amount of information in advance including blood test info etc which saved a lot of time and avoided additional costs.

Before I’d even sat in the chair he told me I clearly have lupus and he doesn’t know why anyone has suddenly decided differently. I explained that I don’t test positive for the specific lupus test and he basically told me it makes no difference and the combination of my ANA, CRP/ESR and symptoms made it very clear, especially the severe level of my photosensitive reactions. I told him that I keep getting told that ANA can sometimes be high with no cause and his exact response was “poppycock”. It’s been positive on every single test that’s been taken over a 15-20 year period and that simply wouldn’t happen without a cause especially when there are symptoms as well.

So he has confirmed a definite diagnosis of lupus, definitely fibromyalgia without any doubt and that there is positive lupus anticoagulant that needs to be monitored, although no clots to date.

Unfortunately I didn’t get as far as finding out what treatment to pursue as I threw in a further complication (although he did tell me I was complicated enough and he didn’t need others 😂). 2 weeks before I saw him I had another bout a f what I thought was food poisoning/dysentery where I pass a lot of blood. It’s the third time I’ve had a bad bout in 5 years now along with ongoing stomach problems that the gp decided was IBS (no tests taken 🙄). I finally had tests done this time and showed him the results - off the back of that he has advised that I almost certainly have IBD. He stressed this needed dealing with urgently and that “when” I am diagnosed it will take precedence over everything else and will be my main diagnosis. Treatment for that will almost certainly work for the lupus as well but the gastro team will coordinate with Rheumy once I have a confirmed diagnosis.

Unfortunately my gp has messed up my referral and didn’t send it for 2 weeks despite a positive fit test as well showing I was still bleeding 3 weeks later 🤦‍♀️ but I now have a colonoscopy booked in for Monday when hopefully the inflammation will still be visible and I can get on with getting treatment started 🤞🏻

So at the end of all that Prof D”Cruz understood exactly why I was seeing him and what I needed and anyone having similar struggles to get a diagnosis so they are listened to I’d say he was worth every penny and gave me the first definitive answers in some 10 years. Now onto the next step