Originally Posted by ginnie

I am so surprised that mayo was not good,
I went to the one in Minn. Good grief I was put through all kinds of testing that was not done by any of the ten doctors and facilities I saw in the mid west. they also had private families who housed you for very little money. I found that through mayo patient advocasy person. I am wondering if that program isn,t available any more. Maybe there is a big difference in the facilities, I don,t know. I sure have recommended that dx facility,, and now wonder if they atr not all that great. At the time I went, I had more or less an orphan disease. Meaning very few of the population had this auto immune problem. Have you since been able to get a dx? Sorry for poor spelling, on my nook,and have some issues with using it. Thank you for telling me. Maybe I should not speak so highly of mayo.

Originally Posted by abbyrition

Synnove, that is great advice I hadn't thought of. The lupus support group serving Florida is in Fort Meyers (if I remember correctly) which is quite a long drive, so I never got in touch with them, simply because I never thought I would be able to meet up with them. Especially when how I'm feeling can change daily, or even quicker.

I really struggled through my years of non-diagnosis with the doctor issue much more. My diagnosis now is SLE with secondary sjogren's, an abdominal hernia and possible diverticulitis.

I have a good Rhumatologist, and Hematoligist (Anemia), Neurologist, Psychologist, and Optamologist.
I am in search of a good Dermatologist that has Lupus experience, a Gastrointerologist that has autoimmune experience, and Ophthalmologist that has Sjogren's experience, as well as a Dentist with Sjogren's experience.

I know that may be asking a lot, but I figure if I'm paying to go to a specialist, I'd like them to have a bit of experience with how to deal with what I've got on my plate.

I don't need them to be nice or hold my hand, but what I personally look for in a doctor is they listen to what I'm saying, about what I want as my goals, and can explain to me the whats and whys of my condition and the whats and whys of treatment. I also need them to be knowledgable, and to be able to say, "I'll look into that" if they don't know the answers to my questions.

The worst offender doctors I've had said/did things like:
Primare Care - "Are you exercising? you just need to lose weight."

Gastrointerologist - Lied to me about medications for a proceedure, and then when they were called out said "I would never say that". Luckily, I had brought the same person with me to the consultation and the proceedure, so I had backup the doc did say it, but it didn't make any difference in the long run, except that I had an advocate.

General Surgeon - After explaining what makes my symptoms worse the doctor told me to do all those things that make me worse, and when I asked how to deal with the aftermath, he said, "Oh I'll have Saturday appointments soon so you don't have to miss work."

The one I hate the most is, "are you on any anti-depressants? I could write you a script for..." no thank you, I have a non-medicinal treatment plan with my psychologist. But then the doc asks again 3 more times. I've gotten this from my primary, the general surgeon, the gastrointerologist, and my Rhuemy. Why a gastrointerologist should be prescribing antidepressants for depression is beyond me... However I am not going to put my mental health care in the hands of the guy in charge of rooting around in my butt. Seems like common sense to me.

Luckily, when the Rhuemy continued down that path after I said no, I got visably upset that he wasn't listening to me, he noticed, and then just wrote a referral to my psychologist to consider an nsaid based path, instead of writing out a perscription. He gets to stay my doctor.

There are others but those have been some of my worst over the years, mostly coming from before getting diagnosed. However, the experiences with doctors have left me with such an anxiety of new doctors. I can't bring myself to go alone anymore, and I procrastinate even searching for a new doctor for fear I will be facing inexperience, lack of care or motivation, or being pushed drugs on, and of course, the you don't look sick why are you here mentality.

I hope that provides a little background into my actual needs, and experiences I attempt to overcome. I guess I feel if they have experience with what I'm going through and how it affects their speciality I won't be faced with just, "you're overweight - lose weight" (mind you I am overweight, I do watch what I eat, love working out, and am very active with my 33BMI {provided I'm not in a flair of fatigue or disabling joint pain} - but I also know being fat didn't give me lupus, and losing weight won't make it go away... I just wish the doctors knew that.)

I really do appreciate all the responses, and even concern for me personally! It's so nice to have these boards, and the people on them for support!

Originally Posted by abbyrition

I really do dislike having to spend so much of my precious energy finding good doctors.