Off to guys hospital tomorrow for UV Light testing, not sure what this appointment is going to be about!

[Lisalou19]

By the end of December, I reckon I could get one of those maps "places you've been". only mine will be "departments you've been to at Guys"

I really have no idea what to expect tomorrow, all I know is I will gladly trek a 1.5 hour journey on public transport to see if I get any further forward.

If anyone else has had this kind of appointment, please share your experience with me. x

[Geordie-Y]

UV testing is to check if you are allergic to sunlight. If you are it will make the malar rash worse, so if you have lupus I would suggest that you’re going to be a bit uncomfortable for a few days

[eekt]

It could be they're hoping for a rash reaction that they can biopsy Lisalou19...fingers crossed the long trip takes you further on your way to diagnosis xxx

[Lisalou19 in reply to eekt]

I am a pro at this trip now, it kind of feels like second nature although I spend most of the journey there having extreme anxiety, but this is something I need to tackle myself and try and make it better.

[eekt in reply to Lisalou19]

Slow breathing...fare well xxx

[happytulip]

I'd be really interested in your experience of this. Why exactly are they doing the test and what does it involve?

I am severely allergic to the sun and any form of UV lights. But my malar rash goes up and down very quickly. I have been diagnosed with ANA neg lupus and get seen at G&Ts but the question if Mast cell activation disorder has also been raised. I will follow your post with a lot of interest. Good luck!

[Lisalou19 in reply to happytulip]

I will let you know how it goes. Seems a strange thing to be doing, but its another avenue that has not been looked at. My health is not good today, so I am hoping what ever I have done does not trigger things even more, I have not taken medication today so as not to interfere with the results. x

[LH44]

I'd be interested to know what they actually do as they said they couldn't test light induced eye inflammation!

[Lisalou19]

Unfortunately I don’t have much to report on, other than my symptoms sound to much like lupus and no right doctor would expose a lupus patient to unnecessary uv rays. I do have a number though for an emergency skin biopsy once rash is visible and also they did loads of bloods for me before my appointment in December with the lupus specialist. I kind of knew this was going to be a wasted appointment but it’s not completely wasted

X

[Comeonpeeps]

That's strange! I had UV tests done this year which diagnosed subacute cultaneous lupus SCLE. And I am highly photosensitive.

Previous to this I had a biopsy done on a sun exposed rash which came back inconclusive, hence the UV tests.

Where did you go? I went to photobiology at Salford Royal for 3/4 consecutive days. Have you had nailfold capillary tests?

[Lisalou19 in reply to Comeonpeeps]

I went to guys in London. I have an appointment booked for December with the Lupus specialist there, so the doctor I see today did loads of bloods for that appointment. I think because I have that appointment booked he would rather the relevant tests be done there which do not expose me to UV. Also he arranged for an on call skin biopsy as he was pretty annoyed that this has not been done to date, although I have asked for it so many times

[LH44 in reply to Lisalou19]

Hi, just wondered how you got on?

[Lisalou19 in reply to LH44]

They didn’t do light testing as they said my symptoms are obvious that an immune response is too blame. I had an appointment after this with the lupus clinic and they took loads of bloods. I went back last week and finally they have an answer for me and put me straight on medication. I am waiting on some further tests before they give me a firm diagnosis. X

[LH44 in reply to Lisalou19]

Ah well I'm glad you have some kind of resolution 🌼

[Comeonpeeps]

That's fair enough. Good luck, hope the biopsy sheds some light to your situation.

I know what it's like having to go to different hospitals.