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taffylinden

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 #31 
Your GP's response was, in my opinion, a very poor one. I understand why doctors get frustrated with patients who look up symptoms on the internet and diagnose themselves. As Cakelady says, Dr. Google lost his medical license long ago. However, what your GP should have done--again in my opinion--was to focus on the SYMPTOMS that made you think you had lupus and why you were so concerned you were looking them up yourself. That would have been far more helpful than accusing you of hypochondria. Did he offer an alternative diagnosis for your symptoms? It sounds like he didn't.

I don't know, but I think if he were my doctor, I'd probably fire him after that. Just me.
Dolphin

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 #32 
Kathrynn, I'm so sorry that happend to u. It happened to me too.  However, sometimes Dr. google  and rheumatolgoy fellowship from webmd is right.    The first rheum I saw said I had JRA and needed to take NSAIDS only.  I did and the treatment was giving me side effects and worsening all my symptoms.  I asked for different treatment, the first rheum told me to increase doseage.  I did, with no resolution.  I inquired about potentional for SLE and HCQ. The rheum then fired me as a patient and told other doctors I'm a diffcult patient and question authority. I saw a second rheum after the first who said I never should have been given that dx but it wasn't even connective tissue.  The  acdemic rheum said it was good I was on HCQ even though I had to fight for it and that dx was incorrect.

With all my other 2 rheum's I only brought in a 1 pg bulleted list of all my sx's with labs and brought my pics on my laptop in a slide show, with no sucess. When the non rheum's didn't know how to treat me, I would bring in articles from a rheumatology book as oppossed to online, which they didn't mind.  At these intial visit's I did not suggests any type of dx. When bringing the diagnostic criteria, I made sure to emphasize that I'm not a doctor, I just don't understand why I'm being told I need lung involvement when that is only 1 criteria and I checked off all the ones I did have.  The fact that I was covered with livedo reticularis, hair falling out, blue extremities, rash in front of rheum, weight changes helped make my case. Going forward, I will not bring the dx criteria but show the report saying I have SLE and my pics and bulleted medical history.


Mr. Bun

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 #33 
A good doctor LISTENS to a patient, if they are open minded.  A good doctor recognizes when they are faced with something they are not familiar with.  A good doctor will readily admit that.....and refer to to someone who DOES know.

A good doctor has the knowledge that he/she doesn't know everything.....and is willing to admit freely.....that they are still learning.  Name me one human, past or present that knew/knows everything in the universe.  The problem is not with the doctors' knowledge or lack thereof;  it is the ego of the medical person that gets in the way of good practicing medicine.
Kathryn3

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 #34 
That was the last time I saw him . I actually thought about writing him a note telling him why i was leaving his practice but in the end hust let it go. And no, he didn't offer any alternative solution .
Kathryn3

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 #35 
You are right Mr. Bun . I understand that Dr's probably get frustrated with patients,diagnosing themselves off of the internet but they need to concede that the patient could actually be right and they did the research that maybe the Dr. should have been doing regarding their symptoms
taffylinden

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 #36 
Kathryn3, after the arrogant rheum refused to listen to me or look at my previous doctors' notes and diagnoses, I DID write her a letter. I was not rude--bad idea, as that may make you feel better but would anger him so much he wouldn't heed it--but I did plainly spell out why she could no longer be my doctor. Maybe this way she wouldn't treat other patients as shabbily. The other thing you could do is to go to healthgrades.com, where you can rate that doc and leave comments. 

And as Bun said, it's important to adopt that attitude of "I know I'm no doctor" and also to NOT insist you know what you have. Someone could go into the doctor and say they had pain and pressure in the chest and trouble breathing and, from reading the internet, insist he was having a panic attack, when in reality, it's a heart attack. Also, since it takes even doctors years to diagnose lupus (when it is lupus), it's obviously not an easy thing. 
Dolphin

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 #37 
I'm debating doing a letter to my first rheum. By telling another doctor I'm a difficult patient, they interferred with my ability to get treatment. They also just terminated me as a patient immediately and didn't refer me to another rheum.  My fear with writing a letter is that the rheum  takes it out of context even if I am very respectfull in it and tells other doctors I am vendictive as "I wrote a hatefull letter." Too bad I can't put fliers around that say come to free medical marijuana evalations with the doctors name (ha ha).
upstater

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 #38 
I thought about writing a letter to the first rheumatologist I saw. Largely because he was rude and upon my second visit had no idea what he had ordered or what my follow up was. "If I didn't call you, your labs must have been normal." So I had to ask specifically about results. Oh....ANA was 1:320 - not really normal. I asked about the pattern and he mumbles "speckled and centromere". He texts someone. He explains nothing. I didn't like him the first time and liked him even less the second time, so I just asked for a copy of all my labs as I made a mental note to never return. As I read the labs in the car, I could see my ANA was listed as speckled only. Not centromere. My sed rate was elevated. He was utterly unprepared when he walked in the room and knew nothing about why I was there. I asked him about a rash and he said "dermatitis" and previously "rosacea". Skin biopsy ended up saying "discoid lupus". 

After seeing my current rheumatologist, she did more labs and a few more things popped up. She put me on the Plaquenil and now I feel like I am doing something protective/proactive....instead of simply waiting for the next shoe to drop.

It irked me that he treated me so lightly....and was so unprepared upon my second visit.

I think I wrote the letter in my head several times on my commute to work. But ultimately I just left him a crummy review on health grades ;-)


Kathryn3

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 #39 
upstarter    I did the same thing . It was all written in my head multiple times 
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