Private diagnosis anyone ? Sick of this constant battle?

[Lisalou19]

Have you paid privately ?

What testing was used? If any

Would you recommend

I’m so tired of feeling so rubbish in myself, and my children need me 😔

[Hidden]

Hi Lisa. I'm not sure where you live but I'm in UK and no, I didn't pay privately. Couple of things I can suggest is firstly keep a diary of any symptoms and photograph any rashes. That way you have it all in order ready for your appointments. You don't say what you think you may have though.

[Lisalou19 in reply to Hidden]

I have a full photo diary

Showing nose sores, rash on face, hands, legs. Swollen fingers. My last appointment, I wasn’t asked anything about my symptoms and little knowledge was given to my diary.

I think I may have a cross over between lupus and some form of vasculitis.

I’m 13 miles from central London, just not sure what way to turn. Bloods are always normal x

[CarolynReed]

Hi Lisa

I did initially go and see a private rheumatologist in Sheffield in a January as my company were pushing for me to get a diagnosis (and I have private cover from them). The one I saw said straight off I think you have GPA vasculitis but you need to be treated in the nhs as it is a multi disciplinary diseases needing various consultations which is a challenge in the private sector. With his help he found me my specialist Dr Stevens and got my nhs appointment changed to him and brought forward by 3 weeks due to the severity of my disease. The cost was £200 and I’m thankful I did that. Hope that may help if you’re in the U.K.

xx

[Lisalou19 in reply to CarolynReed]

Yes Im near central London.

I am accessible to many specialists but do not know where to turn too

X

[CarolynReed in reply to Lisalou19]

LisaGo online and look for private rheumatologist close to you (I’m sure there will be lots!) and then you ring their secretary for an appointment. Check the cost of the initial consultation and go from there. Xx

[SandieB in reply to Lisalou19]

Hi Lisalou, sorry to hear you are not feeling well and unfortunately that's how vasculitis makes you feel until you get treated with the right medication. Iam from Scunthorpe in Lincolnshire and got refered to Dr Jayne at Addenbrooks in Camebridge who got me sorted out, I have WGP. Hope you soon get sorted

Sandra xx

[Lisalou19 in reply to SandieB]

How was you diagnosed in the end? X

[SandieB in reply to Lisalou19]

Hi Lisalou, I was about 6mths before my doctors did anything, it all started with being tired and all my joints swollen,then I started with blood blisters in my mouth and on all my pressure points, was rushed in hospital and had a stay for 6weeks in Scunthorpe and 3weeks in Sheffield Hallamshire, then all under control for about 18yrs then had a really bad flare and that is when I was sent to Addenbrooks. Stable at the minute but it has caused lots of other ailments.

Sandra x

[CarolynReed in reply to Lisalou19]

Try the BMI website xx

[amms43]

Yes, I did get a private diagnosis after several years of trying on the NHS. Vasculitis was suggested by a dermatologist. This was confirmed and I moved to the NHS for the same reasons as CarolynReed. Since then I have been wonderfully treated for MPA. NHS treatment excellent but diagnosis nul points after years of agonising waits. When you think what a mobile telephone costs, a consultant appointment is worth every penny!

[Lisalou19 in reply to amms43]

It was suggested I had a vasculitis disease, but then the bloods come back normal .

I’ve had every allergy test under the sun, nothing shows. Now waiting on a referral for photosensitive testing at guys, but I just feel like I don’t have time to wait much longer x

[amms43 in reply to Lisalou19]

I too had normal bloods. At Guy's Professor David D'Cruz is a noted specialist in vasculitis and it was he who confirmed my diagnosis.

[Lisalou19 in reply to amms43]

I had an appointment today with D Cruz. He was brilliant. He is going to get me referred to him under the nhs.

[amms43 in reply to Lisalou19]

Professor D'Cruz also has a private practice at London Bridge Hospital

[Lisalou19 in reply to amms43]

I emailed this hospital last night, to see if I can book to see him. Thank you for mentioning his name.

I can not afford to sit in front of another blank minded doctor. It’s enough to make you feel like your crazy x

[Germarey]

After weeks with NHS I went privately to Rheumatologist and he was first to suggest ANCA test and it came back posutive. Was immediately switched to NHS.

[Hidden]

Hi again. Before you spend any money, can I suggest you phone the vasculitis helpline on 0300 365 0075 as they are fab, absolutely understand because they also have it and, will help you locate your nearest specialist. This will save you searching round and can then get a referral.

[Hidden]

Just seen you comment about bloods always normal; so we're/are mine which is why the whole picture has to be taken into account and not just tests. Your symptoms make me suspect GPA but I'm not a doctor. The helpline will chat through that too. Good luck.

[2534]

Hi Lisalou

yes, I was pushed around the houses, from consultant to consultant for years, then paid privately to see Michael Lunn at the Queens Square consulting rooms, a private offshoot of consultants many from the National Hospital for Neurology, so you could be referred by your GP to the latter. They are excellent. Anyway he immediately thought it vasculitis and commissioned a nerve biopsy which confirmed it. Skin biopsies had not been positive. A neurophysiologist recommended Dr David Jayne at Addenbrooke's as one of the top vasculitis specialists and I am very relieved to have found him. It means a journey to Addenbrooke's and they are not brilliantly organised as a hospital but Dr Jayne is excellent and it is NHS.

Good luck