[star70]

Hi

I haven’t been about since my Op on the 23rd July as I have been feeling as rough as a cat’s tongue. But I need to ask something and I am sure somebody here will be able to help!

I cant remember if I have asked this before ( I believe all my PK’s are affecting my brain), but I have my Dermy appointment coming up this month and I just want to know a few things beforehand, so I can be prepared!

I had a skin biopsy done a couple of months ago now on the skin rash on my neck. Now, I would have thought that if it had shown anything that they would have contacted me? But going by my previous and most recent experiences with my hospital I am beginning to doubt it!

Is there anyone out there that has had negative results with a skin biopsy and then gone on to be diagnosed with Lupus or is this the end of the line? I have had negative bloods, but I know that these can show up negative for years in some people.

I am experiencing a slight remission with my rash at the moment. I have gone just under a week before where it as almost cleared up, but this time I am into three weeks, it is still visible as a sort of stain, but only on one side of my neck, absolutely nothing on my face.

Although the rash is behaving, nothing else is really and I have been feeling pretty awful like I said since my operation. The fatigue is at an all time high and my joints are extremely painful. My Endo trouble seems to be getting worse and I can’t wait to see my consultants in the next few weeks to ask what they have up their sleeves for me next!

Anyway, sorry if I don’t make sense, but advice on the biopsy would be gratefully received!

Many thanks

Regards

Star

 

[Maia]

It's not the end of the line if the biopsy result is negative... but it does get harder and can be a longer road to diagnosis/treatment then. Only a few of the most expert lupus doctors will diagnose ANA negative lupus, although it definitely does exist! Another possibility would be for a doctor to decide a UCTD diagnosis is warranted based on symptoms and treat you accordingly.

Is there any way you can call into the nurse or office staff and get the results of that biopsy in advance of the appointment? That's what I would do if I was in your shoes at least. Then you'll know the results and will be better able to prepare for the appointment by getting your questions figured out and preferable written down so you won't forget to ask them

The real key is what to do about your symptoms for now and the future whatever the biopsy results are. Please update when you do get the results - I hope you get some form of effective treatment soon.

 

[sam101360]

I agree with Maia, it's not the end of the line, but it does make the road harder and perhaps longer.

I am a serum negative SLE sufferer, I was DX via skin biopsy, otherwise I would never have been treated for my lupus.

Realize this, many skin biopsies come back negative, but that doesn't mean you don't have lupus...what a frustrating disease...you can always have the skin sample retested at the University Hospital to see if they read it differently.

Best of luck - Stephanie

 

[star70]

Thank you for the replies to my post.

I haven't really tried to get my results for my biopsy, I have had so many other things going on, one being an operation last month, but I am sure that it wouldn't be easy. It is hard enough getting an appointment. I have another appointment at the hospital next week with the bowel consultant, so maybe I can find something out then.

I think for now I will go with the flow and see what happens next week.

Thanks again!

Star