RE: Ok, can anybody help with this

[Guest guest]

Bonnie, you have every right to be angry. Even though modern medical schools are starting to emphasize the patient's right to know, to have options explained, and to participate in health care decisions, many doctors still have the paternalistic attitude that they know best. I'm not positive, but I believe that the AMA (Americal Med. Assoc.) has an official position on that. I'll try to remember to look for it. That's always a handy thing to keep in your arsenal--knowledge of their own profession's position on issues. I used that at a meeting with our local pediatricians when trying to get approval for water birth in our hospital. One of them asked what the AAP (American Assoc. of Pediatricians, their national organization) had to say about water birth. I said, "They don't have a position on water birth, but would it matter if they did? The AAP's position on circumcision is that there is no medical justification for routine newborn circumcision, yet nearly all the baby boys in this county are still circumcised." He shut right up & none of them brought up that issue again. Our hospital has been doing water births for 2 years now!

Below, in red, is a portion of an update I took to my local neurologist yesterday. I always take an update & give him a copy. When he read this, he was taken aback & said that he didn't know anything about it. Then he looked in my chart & saw that the nurse had consulted with his partner, who has never seen me. He told me in the future to tell the nurse to put the note on his desk, not give it to another doctor, unless it's an emergency & he isn't available. And he said he would call me if I requested it. This is the same doctor, back when I was first diagnosed with NS, who made time for me at the end of the day, when he found out that I left his office & sat in my car crying, because I didn't get what I needed at that visit. My therapist convinced me to call & tell him about it, because she reminded me that I would want to know if one of my patients left & sat in her car crying. (I'm a nurse-midwife; had to quit working 2+ years ago.) She was right; he had no idea that I was upset, because I nodded & smiled & walked on out. So when I went back in, at 5:30pm I think, he & one of his nurses were waiting & said, "This is your time; we're not leaving until you are satisfied & every question answered." Now, every doc isn't going to respond like that, but some will. You just have to get their attention. I hope some of this is useful to you.

Request to speak to you denied back in October when calling about severe back pain; nurse supposed to call me back. I don’t think she did, but I wouldn’t swear to it. I rarely call to speak to you & I’d appreciate the respect of a return call. When I try to explain the situation to the nurse, I know she’s not getting it all down (remember, I’m a nurse), so she comes back with a recommendation from you that is totally useless. When I called (in Oct.) my back was so bad that I wanted to ask you about trying an epid. Steroid inj. without the fluoro & all, to save money. I had been lying on my back on the floor of Kohl’s, and Damon’s! That’s how bad it was. And what I get is “Doctor says to just keep taking your Vicadin.” Is it too unreasonable to expect a call back from a physician when I request it? I know how busy the office is; I worked in prenatal & women’s health clinics for 20 years. What about email? Do you have an office email address?

Virtual hugs from Indiana,

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Ok, can anybody help with thisDate: Tue, 14 Feb 2006 05:24:30 -0000I usually don't post much, usually when I have a question. I tend to read what everyone else writes. I think that is because I hate writing about myself and it also makes me depressed. Also, I don't want come across as feeling sorry for myself (because I don't), but I am so angry right now I could scream.My family doctor (a friend) got all my medical records from my doctors. She wanted to see what they had to say about me because she is trying to help me. Well, I guess I shouldn't be surprised, but I am. I found out today that they are wondering if I have MS along with the neurosarcoidosis. Also, I found out that in 2001, I was diagnosed with pulmonary hypertension and mitral regurgitation. Gee, the doctor who did the tests and diagnosed me told me that everything was fine, but then sent a letter to my old family doctor telling him what he had found. Again, no one told me. WHAT IS WRONG WITH THESE DOCTORS. If I did my job the way they do their's I wouldn't have one. How can they diagnose someone and just not bother to tell them and get away with it? Doesn't the law apply to doctors? I actually feel invisible to them. They can talk about me to each other, but they can't talk to me. I am so fed up with doctors, and I have been in the medical field for 22 years. Maybe I was lucky, but the doctors that I worked for were not like my doctors. They did their jobs very well.My friends and my family doctor are trying to get me to apply for disability, but I hate to because I like working (at least on the days I feel like it), and it is all that I have left. I was told by someone that if you have pulmonary hypertension you can get disability with that diagnosis. Does anybody know anything about that??I keep wondering what the next diagnosis will be that they "forgot" to tell me about.Sorry to be so negative, thanks for listening. I really do appreciate it. Bonnie~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database