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Thread: Need help being assertive with Dr.

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    Default Need help being assertive with Dr.

    Hello. I don't have a diagnosis, but am fairly sure that SLE is where we will end up. At this point, my Dr. and neurologist seem to not be concerned, which makes me even more concerned. Mainly, what I need is a diagnosis, rather than someone telling me my problem is depression. I have never heard of depression causing neuropathy or TIA/stroke.

    When I go to either Dr., I psych myself up to be assertive, and then I flop because I'm so worried about looking like a whiner and not being taken seriously. I'm struggling right now trying to decide whether I need to just suck it up and grow a spine, or try to find a more compassionate Dr. - really, I would love for this to not be SLE, but need to understand what the heck really is going on.

    Any advice?

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    Hi ,
    I have just recently had the same problem.
    After two years of fighting to see a nerologist i finally saw one 3 months ago who told me i was depressed and i needed councelling and to start taking anti depresents.

    I told her this was crap and that i am not depresed i no what depresion is as i used to be a self harmer.
    They only reason she wanted me to have autoimmune disease blood test and the [lac] test lupus anti coagulant was because i have visual darking wen i stand or move about quiet alot and the fact my dad had 6 strokes and 2 brain hemeridges 5 years ago

    I have now been tested twice and both were positive for lupus anti coagulant, but only found out this week i tested positive twice for lupus sle.
    My doctor rang me and told me i was lac positive and put me on asprin but never thought to tell me i had sle.

    If you think this is what you have demand the test tell them what ever is buging you.
    If i wudent of pushed and pushed i still wudent of khown.
    I wish you all the best as i no how hard it can be.

  3. #3
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi chrstngrl,

    First of all, welcome to WHL. Your problem, is unfortunately all too common. There is a lack of understanding of Lupus in the healthcare industry that is really shocking. Far too many people, including many of our members here, still have not obtained a proper diagnosis even though they have some obvious symptoms that point towards an autoimmune disorder.

    So, on to some advice. One thing that can help, is to take a trusted friend or family member with you to your appointments. Someone who believes that you do indeed have something wrong, and that it's not all in your head. Another idea is to write down your "talking points" and stick with those points during your discussion with your Dr./Rheumo even if they try to steer the discussion in an unwanted direction.

    Have you considered getting a second, or even third opinion? Sometimes a new Dr. who has a more open mind to the needs of his/her patients is what you need. The other advice I would give, you are already doing. You are educating yourself about the facts of what you may or may not have that is causing your symptoms. Remember, your Dr. works for you. If they cannot do their job (as in giving you a proper diagnosis), then fire them. If your Dr. thinks you come across as a "whiner", then thats their problem, not yours. It does not change the fact that you have something going on, and need to know what it is.

    These are just a few of my ideas. We have a bunch of knowledgable people here who have gone through the exact same thing you are going through, and I'm sure they will be along shortly with some more ideas for you to work with. Please, feel free to come here and vent, talk, or just hang out. Once again, welcome.

    Rob

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    I am new to this forum but not to Lupus and the pass around and blowing off by doctors. My advice...PUSH. You pay the doctor (or your insurance) to work FOR you. Get your moneys worth out of them!
    I just want to dance in the rain and stand in the sun...

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    hey chrstngrl,

    Welcome....so I was told for at least 10 years that it was depression or all in my head...It seemed when I got upset then I was proving their theory about me being a mental case. Last year I got a diagnosis and then needed to go to another rheumy...he told me what I have is what he likes to refer to as 'Crazy woman's disease'....I was sooooo upset. He said it in front of my husband who had just recently started believing that I was ill and not all in my head....I did go to another rheumy who told me the opposit.

    I am sorry that you are having to go through this...it really sucks...
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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    Awww sick n tired

    Wouldn't you just like to poke him in the nose.

    :P What a putz.
    Oh look ... a cookie

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    At the time I was so upset that all I could do is cry all the way home...then I got mad...I think that Rob handled it great...I wish I could have done what he did....What a jerk
    I wonder if jerk or Putz101 is a prerequisite class for all aspiring Rheumy's..if so then my present one failed it...he is like an absent minded professor...but not mean
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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    Default Wow! Thank you :)

    Oh my goodness. I am sooo encouraged by all of you. Thank you. I did have my best friend come over and review my medical file with me this past weekend (decided to take things into my own hands) and she gave me the idea to take in a matrix of symptoms I've had/lab results that point to what I'm thinking, so I can at least get a referral to a rheumatologist. Since I gathered the data from copies of the file from this Dr.'s office, I imagine he will have a harder time making me feel like I'm way off base. I also decided to "fire" my neurologist and got a new one today.

    You are all correct that it is better to push, and remember that I'm paying for their services. And it is a really good reminder that some of you have also been seen as whining head cases, but were finally able to get someone to get to the bottom of it. And in the end, you were the ones who were right, not the "experts".

    Seriously, thank you for the encouragement. I go see my Dr. this week, and I'll feel much more confident with your helpful advice in my back pocket. Thank you

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    Hugsss chrstngrl

    Hope your doctor sees the light and gets you pointed in the right direction. Let us know how you make out.
    Oh look ... a cookie

  10. #10
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Good for you chrstngrl! Never forget that you are the boss, and your Dr/Rheumo is your employee. I recently had to "fire" my new rheumotologist. A totally incompetent moron. I unloaded on him in a rather loud exchange-oh well. It's great to see you take control, and take your situation into your own hands. I hope others in your situation see this post, and realize that they too can take control of their situation. Good job!

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