Appointment with Professor D’Cruz today . Healthunlocked community, you are amazing, thank you xx

[Lisalou19]

All I can say, is finally someone who was willing to listen and read my diary .

Out of all the blood tests I’ve had over the years , I had 2 bits of white paper placed in my eyes. My eyes are practically bone dry. Never noticed but I guess if this is all you’ve ever known how would you notice.

Now need to wait for a referral under the nhs. I’ve got a feeling I may just have finally found myself under the right person to deal with my symptoms.

This forum has been invaluable to me. The advice and knowledge shared by others has got me to this point.

Thank you to all who have read and responded to my posts. Xx

[whisperit]

Sounds like a promising start, Lisalou19. Do keep us updated x

[HedgeEnd]

Thanks for sharing this. I've been asked several times whether I have dry eyes and I always say no. Last time I was asked I said I didn't know because as you say, if that's what you're used to how would you know? The rheumy told me I'd know as my GP would have given me drops for it!!!! I think next time I see him I'll ask for the test as now, having read about dry eyes, I think mine might be dry. Also where is Professor D'Cruz and was it a private appointment? Thanks

[Lisalou19 in reply to HedgeEnd]

Totally agree, if your eyes are dry it’s just normal to us. How would you possibly know. If I cry I get tears, but I thought that was the only time your eyes get wet.

The test was pieces of paper rested on the eye ball, wasn’t uncomfortable. He said it’s normal for healthy people to fill the paper with moisture. My result was practically dry.

This highlighted a problem !!!! Never knew of this

It was a private appointment as recommended from this site. £230 , but he really listened and did an examination, I had to take my clothes of 😬. But he also noticed something in my skin which I just assumed was normal.

He is based in London Bridge. He will now write to my doctor and get a direct referral to him under the nhs.

Others on here advised that the money could possibly be the best money ever spent . I totally agree

I’ve spent 14 years on this road. Suspected case of lupus . I am a negative blood carrier also, which has never helped in my diagnosis. I took my blood results with me and still he suspects a form of lupus.

[HedgeEnd in reply to Lisalou19]

Thanks for the information. This London Bridge clinic/hospital definitely seems to be the place to go. I've seen a rheumy on the NHS twice and neither of them asked me to take any clothes off and the first time I was wearing trousers! I'm going to have a serious think about asking my GP for a private referral as it seems to be the only way to get a proper consultation.

[Lisalou19 in reply to HedgeEnd]

I’ve seen a rheumatologist on the nhs. He was good, but solely reliant on my bloods. Which being negative left him baffled .

If you look at the number of members on this site, you realise just how rare these diseases are. Chances are a standard rheumatologist has never come across the symptoms associated with these diseases . So how can they help us? It is a specialist area. If you can do it privately, you have the rights as a nhs patient to choose where you want to be referred, and your entitled to a second opinion. He runs a clinic at guys and st Thomas.

Try this approach with your gp xx

[LesJames in reply to Lisalou19]

Lisalou, What do you mean you are a negative blood carrier?.

[Lisalou19 in reply to LesJames]

I’m not sure this is the correct term. But I’m definitely ANCA negative which is what most doctors look for.

My dad is also negative in his bloods and he has rheumatoid arthritis.

I have many physical symptoms and all you need is a good doctor to look past the bloods x

[LesJames in reply to Lisalou19]

Thanks I see what you mean. All my bloods come back as normal. So I am diagnosed as sero- negative. I had Sepsis last year and my bloods hardly moved. Good luck

[Twinreadr]

Your dry eyes and the paper test can help diagnose Sjogren's. I had the eye/paper test many years ago. After years of dry eyes etc I finally went to an Ear, Nose and Throat doctor. I asked for a lip biopsy. It will definitively tell you if you have Sjogren's. She said she's been practicing 15 years and nobody gets a positive test result. She did my lip biopsy and it was positive for Sjogren's Syndrome. That can make dry eyes, dry mouth, difficulty swallowing,difficulty digesting food etc. Hope this helps you.

[Lisalou19 in reply to Twinreadr]

It does look like this could possibly be included on top of lupus . I’ve never noticed dry eyes before.

Is it only Sjogrens you have ? Apart from the dry eyes etc how do you normally feel in yourself ? X