[star70]

This may be a stupid question, as I guess if results have shown that it is not Lupus, then you wouldn’t still be on this site?

But what I wanted to ask is this; I am having a skin biopsy next month on my rash, that has now been around for over four years. I have recently had blood tests done that were negative, according to my Dermatologist. So if it is not Lupus as I have been told, what could it possibly be?

It is not eczema, or a contact dermatitis etc.

Any answers would be helpful, I am driving myself nuts trying to fathom what it could be.

Thanks and I am really sorry if I haven’t made sense, I am on a lot of painkillers at the moment and they have raddled my brain.

Thanks regards

Star

 

[Lily]

Hi Star,

As frustrating as all this is (and we can identify, most of us have been there), I would sit tight and wait to see what the biopsy reveals. It may give you the answers you seek. Some here have had negative bloods and yet had biopsy proven Lupus.

Good luck and do let us know how you get along :luck:

love
Lily

 

[cemc]

I'm wondering the same. I've had what has always looked like a classic lupus malar rash for at least 10 years, though on a couple of occasions docs have looked at it and said rosacea. Three times I have had different GPs look at it and investigate for lupus, convinced that it was that, and all bloods have been negative. I actually got to the point of having a skin biopsy (from a lesion on my arm) two years ago, with the dermy quite convinced it would show lupus, and it didn't. It came back as macular amyloidosis, which was really weird as it is quite unusual, and examining the rest of my skin it didn't have the appearance at all of macular amyloidosis. I even got the whole lot of dermys at the hospital reviewing my case because it was so puzzling. They also considered systemic amyloidosis, as I quite obviously have some kind of systemic illness (still undiagnosed), but the further tests I had done for that were negative. In the meantime, I still have neurological problems (including with bowel and bladder control), muscle stiffness and spasm, general aches especially in the mornings, fatigue, livedo reticularis, and have been showing traces of protein in urine for ages. I'm about to have a further neurological assessment, and if that doesn't show up anything, then it will be back to the rheumatologist. I'm still on this site because I do have sufficient symptoms in common with lupus that I can get benefit from reading about how other people deal with those symptoms.
I guess the only advice I can offer you is to stick with it. Even if your tests come back negative, if you keep on having problems, then get it reviewed again.... and again..... and again, until you get some answers.
And in answer to your question, if not lupus then what could it be? The answer is just about anything. Lupus is hard to diagnose because so many symptoms overlap with many other conditions. Sometimes it is just a matter of eliminating everything else first, and the skin biopsy you are having is a good place to start.

 

[halfpintfl]

Hi Star, I am sorry, but I haven't read all your previous posts, so I will ask; Are you also seeing a Rheumatologist? I have a Dermy also, but
unless it is discoid lupus ( I think ) then you need the Rheumy. Remember that lupus is DX by bloods, dr.'s observation, and your telling him what symptoms that you have. Be well.

 

[[email protected]]

This may be a stupid question, as I guess if results have shown that it is not Lupus, then you wouldn’t still be on this site?

But what I wanted to ask is this; I am having a skin biopsy next month on my rash, that has now been around for over four years. I have recently had blood tests done that were negative, according to my Dermatologist. So if it is not Lupus as I have been told, what could it possibly be?

It is not eczema, or a contact dermatitis etc.

Any answers would be helpful, I am driving myself nuts trying to fathom what it could be.

Thanks and I am really sorry if I haven’t made sense, I am on a lot of painkillers at the moment and they have raddled my brain.

Thanks regards

Star

hi Star,am also in same boat,my bloods normal,but have had pleurisy 7 times,have got appointment with rheumatologist on june 25.good luck

 

[star70]

I asked my doctor today if she would refer me to a rheumatologists and she has said not until I get the results of the skin biopsy. I can understand this to a certain extent, but I know that it can take a long time for a rheumy appointment to come through and I am worried about yet more delays. Then I wonder what if the biopsy is inconclusive, what then?