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Discussion Starter #1
I had my appointment with the Dermatologist Consultant yesterday. It was what I can only describe as totally frustrating and upsetting.

I had to sit around for the obligatory hour or so to see him, regardless of the fact that my appointment was at 8.50. I ask how can you be running late so early in the day?

I was feeling particularly ill and was trying desperately to hold things together. When I was taken into the consultation room, I was asked to remove my clothes and lie on the couch. No (been there done that)! I am here for a follow up consultation not an examination, for crying out loud.

So I waited around again and then when he came in he said straight away, it's not lupus all the tests were negative; we don't know what it is. You are going to have to have a biopsy done. It will cause scarring and possibly may lead to infection………well thanks for that!

Now, I am at a loss as to what direction to go in next. I am certainly not keen to have a biopsy done, as all my active rash is on my neck and it sounds like they are grasping at straws.

Am I right in thinking that you can have negative test results and still have Lupus? I have looked into everything that I may have and Lupus seems to be the only thing that matches all my symptoms, but now a Dermatologist is saying no.

What do I do next? I am genuinely at the end of my tether, what with this and all my other problems. My gynae has said he won't operate on me until they are certain what is causing the rash, so I am left in constant pain. Seems I am stuck!

Sorry if I am not making sense I just need some advice.

Star


 

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Hi Star,

I'm sorry to hear you had such a bad appointment. It sounds like that doc's bedside manner leaves a lot to be desired :mad:

I'm not too clear from your post what results were negative. Are you talking about blood tests?

I am rather confused as my ANA results were negative and I was then sent to the dermy who did a skin biopsy. The biopsy was taken from an unaffected area of non exposed skin on my stomach and the only scarring is a tiny point of skin that looks a little like a tiny insect bite.

I'm afraid all that doesn't help you much and I don't know the rest of the context for you.

Katharine
 

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Perhaps you can get to another dermy for a second opinion?

My understanding is that they usually prefer to take a skin biopsy from an affected area, as well as an unaffected area. This dermy doesn't seem to be too well versed in lupus skin biopsies.

The dermy was quite likely just giving you that traditional speech about anything and everything that can go wrong with any medical procedure to get informed consent. Of course, it's upsetting to hear that sort of thing but I'm very certain the risks from a skin biopsy are quite low for any adverse effect.

I would proceed ahead with the biopsy in your shoes because I know of many people who have negative blood tests but are diagnosed with lupus from skin or even kidney biopsy (combined of course with symptoms consistent with lupus).
 

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Hi Star-
I just read your post and it struck a cord with me. About 3 years ago I had started getting rashes. Went to the GP who did a skin biopsy - it came back Lichen Planus or something like that. The GP then referred me to the dermy who did another biopsy. This time it came back as "Favor Lupus Erythrematosus" run labs test to determine. Well my dermy ran the lab tests, only the basic panel and my ANA was slightly elevated. He then diagnosed me as having Discoid Lupus. So I went about my business, using sun protection etc etc. Kept complaining to GP something wasn't right. About a year later I had completely plummeted. I kept thinking this isn't normal, I feel like crap and it's getting worse. I was seeing my shrink and discussing my frustration and he said that I needed to get to a Rheumy to have things checked out. So I phoned my GP and told him that my shrink suggested I see a rheumy based on my symptoms. You could tell he was not real pleased but he said before I turn you over to a rheumy I am going to run the tests here to see if there is a need. No problem I said. I got the blood tests and within 2 weeks I was referred to a rheumy because of my ANA, Anti-Ro and Anti Sm.
I had had Lupus the whole time, they just weren’t running the right tests and looking in the right places.
My suggestion would be to not give up and be persistent.
IM me is you have any questions J
Gen
PS – the biopsies do not hurt, no infection, minor scar
 

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Discussion Starter #5
Hello

Thank you for your replies. It has put my mind to ease a tad and I thank you for that.

I got really wound up by this consultant and I think I was still reeling when I wrote my post, so I apologise for rambling.

I am talking about blood tests and urine. I am not sure exactly what blood tests were done as I can’t make out the writing on my medical notes, but I believe that it one was ENA and another ANA, but the others I can’t make out at all.

I know he was only going through the risks of the procedure, as they have to do that and obviously I am familiar with consent forms etc. But the way he described it was like he was going to take half my neck off and stitch me up like a kipper. I think it is too late in the day for him to receive any kind of compassionate bedside manner training!

I shall go ahead and have the biopsy done. I have had three big operations previously so hopefully compared to them, this will be a walk in the park. I just really want some answers (and some treatment!) and if this is a means to an end then obviously I want to go ahead.

It is unfortunate that the date for this isn’t until June and this will be a week after my Gynae appointment. I am worried that yet again my Gynae consultant will say, “well we cant do anything until the rash business is sorted out”. He has been putting me off for two years now and I need something done, sooner rather than later!

Again thanks for reading and helping!

Star
 
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