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Discussion Starter · #1 ·
On Friday I had a long standing appointment to visit a clinic for a gynae to look at my rash 'down below'. I decided to go despite seeing Dr D'Cruz last Tuesday and him being of the opinion that a trial treatment for cutaneous lupus would be the way ahead for me regardless of my blood results.

On arriving at the clinic I was not only confronted with a gynae but a derm and another doctor too. To cut a long story short, the derm looked me over then dismissed everything that Dr D'Cruz had said. She told me that she was aware of him and the lupus clinic, however, that it was psoriasis and I should be wary about having any treatment via them. She noted that I had white patches in my mouth (with blood spots)/severe hair loss, however, dismissed this and all my other symptoms/medical history.

I was additionally told that the two biopsies I had, ie. one from the wavy pattern on thigh (clear in the middle)/the other my scalp (disc like) couldn't have been 'proper' ones as they came back inconclusive???!!!......supposedly the result depends on what the lab is asked for. My derm at the time told me it would be quite straight forward, ie. if it's psoraisis, it will come back as psoriasis.

She advised that I should have another biopsy done plus a skin scrape (again already done). She was insistent that lupus on the scalp caused scarring and said that I didn't have any....despite me telling her about ten times that my biopsy showed that I did have some. She then confused me again by saying that Dr D'Cruz was quite right to tell me that lupus mimicked psoriasis and that it was possible to have both together! After a five minute examination how the **** was she so certain what I had then?

Whilst I was getting dressed I heard her whispering to the other doctors behind the curtain.....obviously saying that Dr D'Cruz was wrong and it was silly to think I had anything other than psoriasis.

It just takes one pompous person to put you down again doesn't it? I've been feeling really confident after my consultation with Dr D'Cruz hoping that there was a way ahead for me, however, I now feel in limbo again and don't know what diagnosis to accept as being right.

When is this going to be over?
 

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Dear Aggie

How unprofessional of them :mad: Im really sorry you had to go through that experience. The only thing I can say to you is to hang in there and wait for your other results in the new year. Remember that they are not questioning you, but actually questioning another consultants opinion. That is a very important difference and if necessary they should be made to explain their difference of 'opinion'. Remember that at this moment it is just their opinion - nothing else.

Unfortunately you are the 'meat in the sandwich' at this stage and please dont take it personally. Hold onto the fact that you were listened to by an expert on Lupus and he gave you his honest opinion at that stage. If this turns out to be correct then you will be well vindicated. If it turns out to be incorrect then, if I were you, I would listen to the advice of someone who looked you in the eye and listened to your symptoms rather than someone who whispered behind a curtain about you:mad:

What a bunch of cretins you encountered. Don't let this experience hold you down. From what you wrote it appears that there is 'professional' sour grapes going on rather than genuinely trying to find out what is wrong with you and how to treat it. It should be relatively straight forward to detect whether or not you have psoriasis. I cant believe that on the basis of 'inconclusive' results they are dismissing your extraordinary endeavours to find out WHAT it is :mad:

Dont you go feeling down any longer Aggie..... You are getting there, believe me. Its your body, your life and your absolute right to find out what is wrong and to be treated appropriately.

Take a deep breath...

Lots of love and strength
Joan:rose:
 

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How sad and irritating!
I think many of us have had analogous experiences. In the three deacades since I first showed what we now can say was obviously SLE I met a lot of MDs, some of whom I could have cheerfully fed into a Cuisinart. Arrogance, incompetence, tactlessness and I am a fairly intimidating male martial artist; I can't imagine what rotten things happen to a woman at the hands of these yoyos.
The upside is that I also met sone wonderful, compassionate, intelligent and dedicated medicos. My Lupus may be worse today than a few years back but the care is also better and life, while challenging, is good.
Don't despair: you have friends here on the Lupus Site and there are good physicians out there. may you find them!
Douglas+
 

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The fact that she was whispering behind the curtain dismissing another doctor claims just goes to show how unprofessional this woman is.
Don't let her get you down, There is away ahead for you and I'm sure that Dr D'cruz will get you there.

Take care
Elle x
 

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Hi Aggie,

It isn't true that the results of the lab depend on what is asked for. Your first derm is right that the lab will come back with the actual problem even if it does not match the doctor's suspicion. My dermy thought I had skin cancer and the result was lupus.

It seems like the three of them ganged up on you a bit when you went in to see a gyn. It does sound like they had an agenda to discredit your lupus doc. I have heard only good things about your rhuemy. Can you drop that group of docs?

Most of us have come accross an ignorant doc at one time or another. Try not to let it bother you.
 

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Discussion Starter · #6 ·
Thank you all for 'listening' to my rant and taking the time to reply.

In retrospect there were so many things I should have said to this woman but you never do at the time. She may well be right, however, it was the manner in which she dismissed my visit to the lupus clinic that got to me. It was almost as if she was implying that Dr D'Cruz was simply saying what I wanted to hear. In fact I don't care whether I have lupus or psoriasis. I just want someone to give me a definite answer and sort out this mess that I've been in for the last three years.

If she was so sure it was psoriasis, why didn't she recommend an alternative treatment for me after hearing that various steroid creams, shampoos and lotions have been ineffective over the last three years? Every derm I have seen has been all talk and no action.....in fact, hopeless.

She didn't even acknowledge that instead of my patchy 5 minutes with her, Dr D'Cruz had talked to me for an hour, examined me properly, read my medical history forwarded by my GP and also looked at photographs of my ever changing complaints.

I know that I should trust Dr D'Cruz's judgement at this stage but it's so difficult when you are almost disbelieved by other 'professionals' and his opinion is deemed worthless. She almost sneered when I told her what he had said.

Anyway, roll on my appointment in the New Year. Fingers crossed this will be put to bed once and for all.
 

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Discussion Starter · #7 ·
emu;529103 said:
Hi Aggie,

It isn't true that the results of the lab depend on what is asked for. Your first derm is right that the lab will come back with the actual problem even if it does not match the doctor's suspicion. My dermy thought I had skin cancer and the result was lupus.

It seems like the three of them ganged up on you a bit when you went in to see a gyn. It does sound like they had an agenda to discredit your lupus doc. I have heard only good things about your rhuemy. Can you drop that group of docs?

Most of us have come accross an ignorant doc at one time or another. Try not to let it bother you.
'Ganging up' is exactly what it felt like. She told me that the two lesions I had the biopsies taken from obviously weren't suitable for the lab to get results (each done by a different derm) and that I should have another done from my elbow....Dr D'Cruz wasn't sure whether this patch was psoriasis (said I could have this running alongside) or lupus mimicking psoriasis. How my original biopsies weren't suitable I don't know. Both were from well established lesions.

Anyway, I was asked to go back in three months time, but there's no way! I know you're all right in saying that I should forget this consultation and just wait for my next appointment with Dr D'Cruz. I know he's really well respected on this forum and he was so lovely to me. The only thing that worries me is that he advised that I would have a trial of medication regardless of my blood results and she told me that I should be wary and think long and hard before I did. Is it dangerous?
 

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What an awful experience to go through... really would feel like being ganged up on... and completely taken by surprise attack as you wouldn't expect that at a gyn appt! To me, it almost sounds like doctors acting like little kids on a playground jealous of another kid.

You make a great point that instead of dismissing it so outrightly, then suggesting nothing for treatment; if they have any bright ideas then they should have brought them out instead of just taking one idea down.

If the trial of medication is Plaquenil, then there is nothing to fear and possibly something to gain. It usually helps skin lupus problems within 2-6 months & is a very safe medication. Quite likely safer than Tylenol.... I think it's worth a shot.
 

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Discussion Starter · #9 ·
Maia;529112 said:
What an awful experience to go through... really would feel like being ganged up on... and completely taken by surprise attack as you wouldn't expect that at a gyn appt! To me, it almost sounds like doctors acting like little kids on a playground jealous of another kid.

You make a great point that instead of dismissing it so outrightly, then suggesting nothing for treatment; if they have any bright ideas then they should have brought them out instead of just taking one idea down.

If the trial of medication is Plaquenil, then there is nothing to fear and possibly something to gain. It usually helps skin lupus problems within 2-6 months & is a very safe medication. Quite likely safer than Tylenol.... I think it's worth a shot.
Thanks for letting me know Maia. Two other derms have also suggested cutaneous lupus to me and she completely ignored this fact too. She was quick to voice her opinions but was about as much use as a chocolate teapot.....no help whatsoever and I'm at the stage where I'm willing to try anything. If it is psoriasis, then fine, however, why hasn't any derm been able to give me a defnite answer within the last 3 years? Surely it's not that hard to diagnose?

Anyway, I think I need to go back to the 'yet to be diagnosed' section!
 

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Hi Aggie,
How awful.Funny you writing about that rash though,I have had a rash between my thighs for the last three days where I have never had it before and it is very sore,so total sympathy to you.
I have to say that I have had eczema for over thirty years and I have never once met a decent dermatologist let alone one who can offer anything more useful than steroids,they tend not to listen to you or your symptoms.The last one I saw sent me off with a large pot of vaseline....yes...very useful.
The one you saw was scathing of Dr.D'Cruz but has she offered any alternative treatment to alleviate your suffering?has she given you any hope at all that your symptoms could be brought under control in the future?
Personally,I'm going to go with Dr.D'Cruz's opinion for myself,he sees this all the time.After twenty odd years of feeling ill,he is the only doctor who has offered me treatment,the others offer no more than antidepressants or cognitive behavioural therapy,best of luck,
Julsie
 

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Dear Aggie, There is absolutely no reason why you should worry about any treatment Dr. D'C. prescribes. As well as being an excellent Rheumatologist he is an outstanding Physician and as has already been said would probably start you on a trial of baseline medication.

I have seen Dr. D'Cruz over a number of years and so has my Daughter. I can assure you that even though he is a lovely person there is no way he would just tell you what you want to hear. He really likes to do things right.

Don't let this get to you.
x Lola
 

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Hi Aggie,
I am very sorry you are having so much junk thrown in your way when you need to have supportive doctors, not antagonistic. Personally, I would go with your rheumy. If he is listening to you, then to heck with the other jerks/jerkettes. I went for 30 years with lupus symptoms, but none really showed all at one time, so I was discounted. At the time we need to be our own best advocate, we are usually so ill it is hard to do so.

You know what you are battling, you know it is real. I would tell your rheumy about the treatment at the hands of this gang of egos, and ask what your best action will be. You may have a good case to write to the local medical review board and report the behavior of this "gang." They need to be stopped before they do this to another person. Their behavior was totally unprofessional and should not be allowed to happen again.

Good luck with this and a Merry Christmas!
Sally
 

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Discussion Starter · #13 ·
julsie;529220 said:
Hi Aggie,
How awful.Funny you writing about that rash though,I have had a rash between my thighs for the last three days where I have never had it before and it is very sore,so total sympathy to you.
I have to say that I have had eczema for over thirty years and I have never once met a decent dermatologist let alone one who can offer anything more useful than steroids,they tend not to listen to you or your symptoms.The last one I saw sent me off with a large pot of vaseline....yes...very useful.
The one you saw was scathing of Dr.D'Cruz but has she offered any alternative treatment to alleviate your suffering?has she given you any hope at all that your symptoms could be brought under control in the future?
Personally,I'm going to go with Dr.D'Cruz's opinion for myself,he sees this all the time.After twenty odd years of feeling ill,he is the only doctor who has offered me treatment,the others offer no more than antidepressants or cognitive behavioural therapy,best of luck,
Julsie
Thanks Julsie. After a few days of mulling this over I am trying to forget what this woman said to me and just concentrate on Dr D'Cruz trying to get me better......she offered no help whatsoever. I'm sure that he will get me 'sorted' one way or another regardless of what I have......he's the most thorough doctor I have seen since my problems started. I have seen five derms in total, and as you said, all have been hopeless. Every single one has fobbed me off with steroid cream and little else. I've had the vaseline and aqueous cream too! Anyway, hope your rash clears soon. It's not the best place for it to appear is it? Merry Christmas!
 

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Discussion Starter · #14 ·
LolaLola;529247 said:
Dear Aggie, There is absolutely no reason why you should worry about any treatment Dr. D'C. prescribes. As well as being an excellent Rheumatologist he is an outstanding Physician and as has already been said would probably start you on a trial of baseline medication.

I have seen Dr. D'Cruz over a number of years and so has my Daughter. I can assure you that even though he is a lovely person there is no way he would just tell you what you want to hear. He really likes to do things right.

Don't let this get to you.
x Lola
Thanks Lola. Logically I know that Dr D'Cruz isn't that type of doctor. It's just that I've been fobbed off by so many 'experts' over the past ten years that I can't quite believe/accept I might finally be getting a diagnosis. This most recent derm just managed to bring all my doubts/worries to the surface again. I just need to go with the flow and let Dr D'Cruz make the decisions from here. As previously said, regardless of what I have I'm sure he will point me in the right direction and ensure that I find the appropriate treatment. Merry Christmas!
 

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Discussion Starter · #15 ·
Pink Pearl;529294 said:
Hi Aggie,
I am very sorry you are having so much junk thrown in your way when you need to have supportive doctors, not antagonistic. Personally, I would go with your rheumy. If he is listening to you, then to heck with the other jerks/jerkettes. I went for 30 years with lupus symptoms, but none really showed all at one time, so I was discounted. At the time we need to be our own best advocate, we are usually so ill it is hard to do so.

You know what you are battling, you know it is real. I would tell your rheumy about the treatment at the hands of this gang of egos, and ask what your best action will be. You may have a good case to write to the local medical review board and report the behavior of this "gang." They need to be stopped before they do this to another person. Their behavior was totally unprofessional and should not be allowed to happen again.

Good luck with this and a Merry Christmas!
Sally
Thanks Sally. I will mention my concerns to Dr D'Cruz when I see him next. Merry Christmas to you too!
 
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