PDA

View Full Version : Need help being assertive with Dr.



chrstngrl
09-21-2008, 09:30 PM
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?

cherie
09-22-2008, 04:40 AM
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.

rob
09-22-2008, 05:00 AM
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

deester
09-22-2008, 12:54 PM
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!

sick n tired
09-23-2008, 01:10 PM
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...

sits_inthe_corner
09-23-2008, 01:21 PM
Awww sick n tired

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

:P What a putz.

sick n tired
09-23-2008, 09:05 PM
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

chrstngrl
09-29-2008, 07:58 PM
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 :)

sits_inthe_corner
09-30-2008, 01:23 AM
Hugsss chrstngrl

Hope your doctor sees the light and gets you pointed in the right direction. Let us know how you make out. :)

rob
09-30-2008, 02:44 AM
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!

Poopydink
10-02-2008, 05:50 AM
Dear Chrsngirl (sorry if I got that wrong :()
I agree with all the above, as far as making docs work for you. It's unfortunate that due to their own incompitence, they will end up writing everything off to depression. When my old rheumy put me on anti-depressants, I didn't question it at first...ya figure they're supposed to know what they're doing, right? Though the anti-depressants did happen to make me feel better mentally, all my other symptoms were still there. So I too found someone better. I think the most important thing you did to help yourself was to get a copy of your medical record. If anyone out there hasn't done this yet...DO IT. You have every right. Just write a simple note requesting copies of your record (for your "personal records")...even if it's just your most recent test results...sign at the bottom...and they are legally obligated to give/mail them to you. Once you've got 'em, start educating yourself...you can even look up the particular tests on the web to see what the results mean. It kinda makes you feel good to know what's going on with yer bod. Anyhoo...Chris...I hope your visit goes well...BE STRONG!! :):) Take care-D

lupus05
10-04-2008, 06:56 PM
its not so much being assertive with your dr as showing him how you function daily. my suggestion is to keep a daily diary.also make a list of your top concerns and symptons to give at your next visit. request some labs if your getting blood drawn.if that fails to get your concerns met go through your other drs gyno for example.ask them to write a progress note to be shown to your family dr.if all this fails its time to find a new dr.you are paying then for their services.

DrinkofWtr
10-05-2008, 05:44 PM
There are a lot of "jerk" Drs. out there period, not just rheumys. When I was pregnant 28 years ago. I spontaneously aborted my baby. I was bleeding and went to the gynecologist. He accused me of using a coat hanger to abort my baby. I said, "You don't know me, as I would never do something like that." Some time later, my sister-in-law saw him in a supermarket shopping line. She pointed him out to everybody and said, "That's the Dr. that accused my sister-in-law of using a coat hanger."
She said he turned every shade of red and purple imaginable. Serves him right, the "jerk". He was supposed to be a training Dr. for other gynecologists at UCLA or USC, one or the other, in Los Angeles. This scares the hebeegeebees out of me, as there must be plenty of others like him out there in the Dr. world.

DrinkofWtr

Poopydink
10-06-2008, 06:36 AM
DRINKOFWTR...

HOLY CRAP!!! THAT'S MORE THAN HORRIBLE!!!! WHAT A COMPLETE ASS!

But, I had to chime in to say...YOUR SISTER IS AWESOME!!!!!!

Be well-D

Twiggy
10-06-2008, 06:54 PM
I suspected my illness over 20 yeas ago, now I have been diagnoised. I see a few problems in the diagnosis of lupus, 1) getting the doctors to believe you re not crazy, 2) Trusting your symptoms which are a significant clue, 3) treating the symptoms to give a patient relief from pain. Doctors are afraid to commit to a diagnosis until they have medical proof, I understand that they have to protect themselves but reality says they can sometimes be wrong, we need to remember they are human. I feel that if I were treated 20 years ago by symptoms, my illness may not have progressed to this point. My biggest adice is do not give up, be persistant, keep a journal of you symptoms, and most of all keep a copy of your medical records because mine form 20 years ago have been destroyed.

Stay strong, Twiggy

chrstngrl
10-06-2008, 09:43 PM
Well, I am very glad to report that I handled myself assertively with my Dr. and although I didn't get everything I wanted, I walked away with a referral to a new neurologist, and a lab sheet to check on things that I have found issues with in previous records that weren't followed up on. I am hopeful that the results will show him that my concerns are real. After that I will be asking for the referral to the rheumatologist. If I still have a problem at that point, I will move on to a new Dr.

I just can't tell you how much I appreciate your encouragement. I was thinking of you all in the waiting room. I have never been this assertive with a Dr. before, and I felt good walking away. Thank you all :) I will keep you posted.

I appreciate the suggestion about keeping the daily log. It could be a tool to show the Dr. what I mean, instead of letting it be a subjective issue.

sits_inthe_corner
10-07-2008, 01:16 AM
Congrats chrstngrl

It is a very rewarding feeling to know that I have stood up for myself and looked after my own best interests. Most doctors (if they are worth their salt) will appreciate you taking an active role in your own health.

My family doctor is very much this way. She was quick to give me copies of everything I requested and anything she thought I should have as well.

Good luck with the journal, I hope it proves to be a valuable tool.

Saysusie
10-07-2008, 12:05 PM
Many congratulations.

It is very important that we become pro-active in our health care and that our doctors understand that we will not be dismissed. Keep it up....it is your right!!

Peace and Blessings
Saysusie