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papillon
02-11-2008, 07:08 PM
Hi all,

so I neeed some advice about rheumies. I read in a book once that you should pick a rheumatologist who you can tell everything to and you're really comfortable with.
my rheumie does her job fine but she's really detached and usually that is fine but occassionally i think it doesn't help.
like i never tell her when i'm sad and what if that's something she should know. and today she was surprised that i was sad about her suggestion that i go off birth control and she'd know why if she knew how freaked out i am about the cellcept and getting pregnant and that i live with my boyfriend.
my mom thinks that it's more impt that i get a good primary care physician and just let the rheumie do her job and rest on the pcp.
any thoughts? do people love their rheumies?

jesseyleigh
02-11-2008, 07:16 PM
A great rheumy is your best friend because they should listen to you. The best care i got was from a rheumy invested in me as a person therefore more invested in my health and can then come up with creative solutions for your life.

mnjodette
02-11-2008, 08:14 PM
I think lupus patients go through a lot of 'trauma' - diagnosis itself is such an ordeal. And then the symptoms can change so quickly, making it so hard to manage the disease. A good rheumatologist should be able to help you navigate all of the confused signals that seems to be hallmark of lupus. You should be able to tell that doctor - without reservation - that you're afraid, sad, tense, stressed...whatever. Those feelings can affect your disease. If you don't believe you're getting what you need from your doctor, you might want to think about finding another. You're in this for the 'long haul' - an understanding doctor could sure make a difference.

luvwine2007
02-12-2008, 04:41 PM
Finding a good rheumy will make you feel better. I felt like I was crazy before but I have a great rheumy now and it makes a world of difference. So if you don't feel good about your rheumy, maybe you should look around some more?

sits_inthe_corner
02-17-2008, 05:31 AM
She's cold, seldom smiles, you have to pull and dig information from her. I didn't even know she suspected lupus...I thought she was treating me for ostio arthritis...imagin my surprise. She told me she wanted me to take plaquenil with my arthrotec. I asked why, she said cause I think it will help.

When I got the print out for plaquenil I called her office and asked so...which one does she think I have? Malaria? RA? or lupus? The nurse called back and said lupus! That was just before xmas...merry freaking xmas. I dont get to see her again untill next week...as you can tell I'm much calmer now..I'm so sure we're going to have a lovely visits.

Just to be clear. The lupus doesn't surprise me. My mother had lupus and my sister has it. What upset me is the fact that I have rheumy who has no communications skills what so ever. She is on strike two with me. If the visit doesn't go well next week I'm going back to my family doctor to see how much of a chance I have with being refered some where else.

Missy
02-17-2008, 05:47 PM
I think this is an interesting discussion. Because it's important we get our needs met. However, it's also important that we don't set our expectations higher than someone can provide.

Of course, there are good and bad Rheumies (and a lot in between), just like everything else in life. I, personally, don't want my Rheumy to be my "best friend" or "confidant." But, I do expect them to be professional, keep confidentiality, be communicative, and be open to my feelings about how things are going. I have fortunately found this in my Rhuemy. Would I hang out with him outside of our patient/doctor relationship? No. Do I always agree with him? No. But, he gives me the information he has, and I combine it with the information I have about myself, so that I can make the best decisions I know how for my life. I do think I have a high amount of responsibility in our relationship. If I haven't shared something that could be really important, he can't evaluate how it could potentially effect my health. And, if I don't share if I disagree with him or need more from him, then how can I expect him to provide?

So, I think finding someone that meets your needs is really important, but so is determining what kind of patient you are going to be.