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Discussion Starter · #1 ·
Hi

I had my appointment with the Dermatologist Consultant today, following my skin biopsy a few months back. I had to wait for such a long time for this appointment after they cancelled it three times. So I was determined not to be fobbed off with a two minute chat from a consultant who can‘t look me in the eye!

Thankfully I got a different consultant, although he had the thickest accent I have ever heard and I struggled to understand him!

As feared the results were that the biopsy was inconclusive and it only confirmed that I had a serious chronic inflammation! Tell me something I don’t know!

However, as I was hobbling to the examination couch he asked me what my walking stick was for? Well I am afraid I couldn’t help myself and said it is to stop me falling over! Unfortunately he didn’t appreciate my sense of humour! So I told him it is because of the severe pain I have in my joints particularly my right hip! I also had to explain to him about my other serious chronic conditions (in spite of him having my incredibly thick file in front of him, don’t they think it is maybe a good idea to read up on a patient beforehand, so they have a rough idea of what they are dealing with?).

So then he said mmmm that may make a difference to the diagnosis…no kidding! I said to him that I have an idea of what I have, as it matches all my symptoms. He said well what do you think? So I told him that I believe I have sub-acute cutaneous lupus. Wow you should have seen his face. All of a sudden he starts writing stuff down and fiddling with his computer etc. Next thing I know he requesting more blood tests, patch testing to eliminate contact dermatitis (again) and he says to me, yes I think this may be right, but it is very hard to diagnose! Is it is it really that hard?

So now I am going through all the tests again and into the waiting game once more! I am so tired with it all it is not true. As I was having my bloods taken the nurse said to me how incredibly healthy I looked! Ironic or what?

Sorry for blabbering on again!

Star x
 

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Hi Star,

It sounds like you had a very good appointment. You had somebody that listened and took you seriously.

I know it takes some people a very long time to get a diagnoses. I was one of the fortunate ones that was diagnosed the first time I went in.

I had a nurse just tell me that"I looked so good.":ermm: She knew I had lupus too. You just have to let it roll off when people say that. :sigh:

Take care,
Lyn
 

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Hello Star
Let's hope you will at long last get some answers. You've had such a lousy time for so long. It can be very hard to diagnose lupus because some cases are complicated and others far from clear, especially if there are other conditions alongside that muddy the picture further.

I don't know at what point if ever the lupus possibility was raised, but dermatologists should always ask about other health problems and should do the relevant lupus blood tests if lupus is a possible diagnosis. If you haven't seen a rheumatologist yet I think you should have had a referral.

In my view lupus frequently takes a long time to diagnose because of medical incompetence and sheer bad luck of coming across doctors who are not proactive and very likely not well informed.
Sorry if this has already been mentioned, but have you considered seeing a lupus specialist rheumatologist or dermatologist privately ? An expert doctor might be able to see that it is subacute just by looking. Most people with SCLE do have antibodies especially anti Ro( figures range from 50%-70%) but even when there are no antibodies they are more likely to suffer some constitutional and systemic symptoms. You've checked out the various picture sites linked to in the sticky post here I guess. Not that it's possible to make an sure identification from photos.

Strengthening hugs and wishing you lots of much better luck.

Clare
 

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Hi Star,

That sounds like progress even if only of the baby steps kind. Wishing you all the best for further progress and keep at it. You can't give up now!!

hugs :hug:
Katharine
 

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Discussion Starter · #5 ·
Hi

Thank you for your replies. I have not been referred to a Rheumatologists yet, regardless of requesting this months ago from my doctor. She seemed to think that it was better to wait until the Dermatologists had made a diagnosis. I don’t understand this especially considering my history and the previous delays I have had with diagnosis of my other conditions. I wish I had the strength to be more feisty!

I am afraid there is no way that I can afford a private consultation, I am not able to work because of my illnesses and my financial situation has gone from bad to dire!

I have compared my rash to the pictures on one of the sites showing Lupus rashes and my rash is almost identical to several. I have tried to post a picture on here to show it but failed miserably.

The consultant mentioned Lupus at my first consultation last year, but at no point did he ever ask me about any other problems I had, despite me trying to tell him. My appointments were very abrupt. I still fail to understand why they don’t look at my file and see what I already have wrong with me. Surely it would help them?

Anyway, I have to see my GP next week and hopefully she will listen to me this time and give me the referral I need.

Thank you for all the support!

Star x
 

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Dear Star, I just wanted to wish you lots of luck, patience and all the unsquashability you will need to get through this. Believe me, there are very, very few of us who got a speedy diagnosis. Where Doctors are concerned I think of it like having to kiss a lot of frogs before you find a Prince!!
x Lola
 
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