I'm not sure if I'm hijacking here - but I know many of you mention that you bring significant others etc to appointments with you who see you and know how you function from day to day..... and that they contribute and the docs seem receptive....... does this add credability????????

This may seem a strange tangent - but I was thinking that my vets seem to always be kind, attentive, talk to me about the "patient" and listen..... they seem to get better care then a lot of us humans....

Is having an advocate who is knowledgeable along with you at least first visit helpful? I know, as Alkymyst mentioned, sometimes being "too knowledgeable" seems to be a threat to some, and maybe could encourage better cooperation from the doc?

Hi kmeb:

I think it's all in how you approach the doctor. I'm obviously my husband's advocate. I simply am. He could never be my advocate. Never in a million years. He wouldn't know the questions to ask or how to interpret them. He's not a communicator.

As a matter of fact, when I used to go with Alan on his appointments to see Dr. Fred, both doctors at that practice would direct many of the questions and explanations to me. I knew how to ask a question (with respect and not a know it all attitude). I mean, I didn't know anything so there couldn't be any know it all attitude but I have seen people in the other rooms demanding this and howling at the doctors and I would know not to behave like that (you'd be amazed at how some people act in their doctor's office).

One time the doctor was examing his lower extremities and I asked a question about Peripheral Vascular disease. He was impressed that I even knew what this was. But the best was when they were giving him a carotid doppler and the doctor looks at me and says "Melody, explain to Alan what we are doing". I laughed out loud, and Alan said "yeah, I know, she's good" This was last year and thankfully his doctor is a sweetheart and appreciates that Alan follows his program of good healthy eating and does what he can to maintain whatever health he has left.

I see it all the time. You go to a doctor's office and they say "you know you have to lose weight, you weigh 300 lbs and the patient goes "oh, but I can't give up my meat and potatoes and the doctor just sighs".

Alan and I have learned that this way of thinking and acting doesn't accomplish anything. A doctor has to know that you are following his advice and he appreciates it more if you do this. We've learned this because we've seen SO MANY DOCTORS.

You learn as you go. I think it depends on the personality of the physician and how the patient (and his advocate) come across in the examining room.

It brings back a memory of when, years ago, I was in my previous primary physician's office because I had a pain in my arm.

I'd been going to this guy for 13 or more years. A very good doctor. He examined my arm and I looked at him and I said "how do you know I don't have Amyotrophic Lateral Sclerosis"? The look on his face was absolutely priceless. He said "How on earth do you even know how to pronounce that??" I said 'never mind, how do you know I don't have it??" He started to laugh and he made me move my arm a certain way and he asked me questions and said 'See, if you can do this, and you can't do that, well, believe me, you don't have ALS". I used to be the kind of person (I probably still am), that if I have a stupid symptom, I immediately think I have this disease or that disease.

Believe me, over the years I've learned what to say and what not to say in the examining room.

I'll tell you this though. Some people should never have become physicians. They have the beside manner of a goat. Met lots of goats in my time.

Thankfully though, not in the past year.

I think that it helps to have someone with you especially if it is something complex that requires asking certain questions or remembering to mention symptoms. When my wife broke her leg and we went through a three year odyssey of infection and non union fractures, external fixators and 25 operations, i went with her every visit to 7 orthopedic surgeons and kept track of what she wanted asked or addressed. Being the patient you get caught up in what the doctor is saying or asking or doing at the time and often forget what you needed to ask or forget what he told you five minutes before. In this case credibility wasnt an issue since it was obviously broken, so at the doctors visits they did address her concerns. In the hospital after operations, pain control became an issue several times and the residents tone would change after i showed up to discuss it with them.

I can hold my own for myself but sometimes i wished that someone was with me when dealing with certain doctors.

You all have pretty well covered everything I can think of. But I thought of a few things. We started this journey with PN in a small rural town in Texas with one neuro. When he told me he couldn't give me anything else for pain when the medication he had prescribed wasn't working, I went to another neuro. Not much better as far as finding the answer, but he did believe me when I told him I was in pain.

Actually, I just thought I was in pain. As it's gotten worse and other pain causing things have added in, I know I wasn't in nearly as much pain as some of you. It has changed now and I'm looking for answers for the pain.

Kmeb, I've found my greatest asset in getting the most out of a doctor's visit is my husband. Even tho his memory is worse than mine, his being there lends credibility to my problems for some stupid reason. I don't know why I can't be believed on my own, but it is really what happens with some doctors.

The other thing I think is really important, is a list. A list that contains the things that need to be addressed with your doctor in that visit. And then after you make the list, put them in the order of importance. I can guarantee that most of you will only get to discuss the first 2-3. There are exceptions to this of course.

Billye

Would you all believe that I once had a physician actually say to me "Oh you have pain?? GOOD GOOD, PAIN IS GOOD!!!!

I almost bonked him.

mel

practicing? Really! Honestly Pain IS GOOD in that it tells US and our bodies something is WRONG with us!
I currently have a good neuro, and some of my bakers' dozen other docs are super as well. My last neuro visit, things were running late [as usual] but folks in the waiting room were all, in concert, not unhappy about the fact that each didn't mind their wait...past their designated appointment time, because when it became their TIME, they would get the time needed! All waiting agreed that the extra wait was worth the quality time each ultimately received. This neuro listens, asks key quality questions and then WE work out a plan to deal with issues. Quite unlike many others I have experienced and likely will in the future.
I have never flaunted 'internet' learning per-se...I simply state that I've read papers found thru the NIH or Pub-Med, and will ask key questions regarding the issues in relationship to ME. I suspect I'm prodding him to do a little bit of 'quick research' himself-just to keep up with me?

Billye, Kmeb? There are patient advocates, they usually charge or deal with legal aspects only... Having a spouse or friend present at times is helpful, but only if they are versed in the 'basics' of our key med. issues. Having that same person interrupt with either 'basic' questions about your med. issues, or inserting ?'s about their issues sets things back A LOT. I ALWAYS have a steno pad [fits in my purse] with a short list of things to cover [starts out as 20+ items] pared down to 4-6 issues. That I have that list, go down it and check off that addressed, with short notes, does keep the docs alert that I am paying attention- so they must.
It IS hard to keep track of all that transpires during an office visit! It is said that one can only assimulate something like 3-7 issues during a certain period of time...I believe that to be true, ergo-those notes.
At times, I feel anger that we all have HAD to become almost as knowledgeable [or more] as the medical profession about our neuropathies and the pain that goes with it.
Please! All! Any and all good, bad and indifferent experiences should be put down here! We do need this key outlet and who knows? Maybe some neuros will actually read it and get a reality check - one can always hope - j

One of the neuros i went to his office would tell you the time of your appointment is the time that you should call to find out when you really should come in, which is better than sitting in the office waiting for nothing.

Yes i've heard that many times while working Mel,always made me bite
my lip. Or pain,wel it might drive you crazy,but it won't kill you. I;ve
taking care of for years,my husband for 5,my mom and Bob and a
big family of people I only saw and never met..

I wish those who could would help and volunteer to be a avotitate,
and I said volunteer,because now people are making this a buiness.
I finally found a neuro I respect but she shattered her leg,I sat with
her in the hospital,let hr crush my hand,but when she looked at me
with those tears,and told me she was sorry for my pain..If everything
goes right,you know what I mean Joe,it's bad and I'm selfish because I
just don't know if she's coming back..Well it scare's you,and it's hard
to when you can't write to always remember,with her she wrote it done.

And so many Drs. resent tape recorder's it's hard,alot harder than one know's
except those that are alone..Friend's are good,but they can get tired.
But if i have a question i ask a lot of you good people.

In 96 when I was in a head on collision ,a wonderful man asked if he could
help,we talked he's one of the chaplain's...He's at the hospital I go
he goe's with me to my appointment's,in the summer his wife does when
she's not teaching,the look on the Drs. face when The chaplain walks in
we have the same last name is priceless...But being alone is not easy in
big cities it can be a struggle.. hugs to all Sue