To me the worst neuros are those who diagnose the patient as having PN with very little or no testing and then send them on their way with theres nothing to be done except take neurontin etc. At least the neuro's who cant find anything wrong with minimal testing leave the door open to go to someone who can figure it out. How many people are walking around out there who believe what they were told that nothing can be done and are suffering needlessly? i also consider to be bad neuros those who after an intial test such as emg/ncs recommend a nerve biopsy instead of using exhausting other testing before recommending it. That was my first neuro. I knew enough at that point to search for another neuro first, but there are many people walking around with needless scarring and pain from unecessary nerve biopsies.

I ve had a few good neuro's who have done a lot of the appropriate testing and at a certain point leave it up to me as to wether i want to persue anything else. I have never had a neuro want to put me on something like IVIG just to see if it works despite no evidence of any autoimmune markers or symptoms after numerous blood tests and a spinal tap. I would add that type of neuro who use treatments such as IVIG as a diagnostic tool to the bad neuro category though i know some of you would disagree with me. IVIG , plasmapharesis, cellcept to me have too many side effects to be used as diagnostic tools.

Well i don't ,i agree thank you. Sue

I think for me and I am beyond frustrated because I just switched again internists and I know not neuro but have had the same issue when switching neuros. I feel the docs don't listen and are so rushed. If it is not concrete they brush it off. For example along with my pain I often get this breathing/dizzy issue and since nothing in tests come up it is brushed off. When I connect my symptoms the specialist I see whether a neuro or endo what ever only looks at theres and the internists want to shove me off to the specialist. I hate the shove off. The neuro says go to the internist,the internist to the pain,the pain back to the neuro. No one wants to take responsiblity. The random trying of different things like meds,pt,different pain relief like stimulators that to me is just guessing. I have went to 4 pain docs with 4 different things I should do. What do I just just pick one. I have gotten snapped at for asking more questions and told flat out they would ask them. Ok sorry this is my rant maybe off topic. I feel listening,acknowledging ones feelings/issues,and a doc who will look out of the box would be good. It may take an extra 5 minutes of there time but will in the long run save a lot.I know there must be some good docs out there but after how many I have seen without feeling I can call on any of them an actually being put in more pain for example yesterdays physical exam I start to loose hope and not want to go to anymore. The pain I have daily is bad enough but when it is extra from the docs and I still get no answers it is frustrating. Ok sorry about my rant.

but it's the consequence of more infrequent posts

1- What constitutes to YOU as a good neuro's qualities?
2- What constitutes to YOU a bad or indifferent neuro's qualities?
3- Worst of all, What constitutes the WORST qualities of some neuros?

I'll take a stab at 2 & 3 first although I'm sure I'm only echoing sentiments already expressed many times.

In my experience Drs in general not just neuros who approach me with an arrogant and condescending attitude are an immediate and permanent turn-off. I've found that these people
view me as the disease, syndrome or symptomolgy behind door #1 or curtain#2 not as a patient or a person
perform perfunctory, at best, physical exams
take an abbreviated history or leave that to a PA - I have nothing at all against PA's, rather I have a very high regard for them because, in many cases they are more thorough than the Dr.
do not review records prior to an OV or a consult
do not listen
do not ask leading questions that require a descriptive explanation and therefore a true dialogue and discussion
do not easily order diagnostic tests beyond those evident from their practices' own lab slips
discuss results as though I'm not present
are not interested in having a second, third or fourth opinion if necessary
give me a feeling of being rushed through an appointment - to keep the patient/hr or day ratio as high as possible
presume a diagnosis based on existing labs and test results which is the diagnosis regardless of future results, i.e. I'm right so don't confuse me with the facts
IS THREATENED BY A KNOWLEDGEABLE PATIENT, PARTICULARLY ONE WHO ACTS AS THEIR OWN ADVOCATE

As for number 1, to save space and time it would be the opposite of everything above with these additions.

Our PCP has worked with me for several years now to coordinate labs, tests, etc. has not only read several papers I've given her about IEDNF density, MDL and SFPN but she's also asked for some additional references which I had - she is genuinely cares about me as a person and has always been open and receptive to discussing my situation and symptoms with an eye towards what else can be done.

Among the 5 neuros I've dealt with my current one impressed me the most to start because our first appointment lasted 90 minutes and we've not had one for less that 45 minutes subsequently. At my first visit he DID NOT review the stack of records I brought prior to talking with me and my wife. Instead, he put them aside and he took his own detailed history, performed a very thorough physical exam, asked leading questions that required detailed answers from me and he took copious hand written notes, which I could read "up-side down". He also asked Vicki many detailed questions and used her input to both "corroborate" my responses but also to further refine and expand them with a different and perhaps more objective viewpoint.

He answered all of our questions thoroughly and in as much detail as we wanted, e.g. we've discussed immunohistochemistry and confocal microscopy in IENFD for skin punch biopsies. He suggested additional blood work, repetition of EMG/NCV studies which he performed himself, and then discussed the results with us immediately.
His office staff has always sent me the OV summaries, lab results, and all relevant info for my case at the same time they are sent to our PCP and other Docs usuually within 7-10 days.

He is not threatened by 2nd opinions, e.g. my recent trip to Johns Hopkins for more extensive blood studies and the skin punch biopsies - turns out the head of the EMG/NCV lab at JH was a student of my neuro. He sat with us and reviewed the NCV/EMG results from his lab and JH on a nearly line by line basis. Also, he's well aware of the importance of B-12, other vitamins, alpha-lipoic acid, acetyl-carnitine, etc on nerve regeneration and PN and suggested some additional supplements to see if they improve my situation.

All-in-all in my opinion, this neurologist is what I think most docs should be - reminds me of the doctor Wm Hurt became only AFTER his throat cancer and surgery and he was treated like a normal patient in the old movie, The Doctor.

Sorry this was so long-winded but it touched a nerve in me as it does in everyone else on the forum.

Alkymst.

It's touched a nerve in many,as far as i'm concerned there is no to
short anything we are here to learn..Hugs Sue

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