Good and bad neuros - which is which?
 

We hear, read learn about many good and bad experiences about finding the good, bad and the downright UGLY in the neuro's we encounter when we get diagnosed...
Maybe I should post this as three categories?
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?

There ARE good neuros out there....but IF we don't just post it publicly, no one will ever know what the well...'warning' signs are?

I know from my own misadventures into diagnosis-land that I had some solid ...umm? near-misses. I admit I am far more fortunate than many. I still call my 'first' neuro, [as does my husband] 'the quack, or ambulance chaser'...need I say more? [I mean, the guy is always being 'paged' while I'm in the hospital...no matter what the reason I am there?] I don't miss him one whit!
Any and all input and comments are welcome! Get it out of your systems! Consider it therapy or something? HA - j

1- A good neuro who is experienced in PN and will listen fully to your symptoms and make full use of all tests available to find out what nerves are involved and all tests available to try to find a cause.
Combining 2 & 3 - doesn't listen to you or believe your symptoms are real, not using or bothering to use any available tests, not reffering you to someone else that has more experience in that field.

I have seen my mother go through 3 quacks,neuro's that is. Why did she
go to then.
1 They were convenient.
2There was only one in the small town she was in,ahh quake and idioit.
3 One I found right here in Columbia li like the idea he came from Mayo.
so must be good. wrong,sent her to a Back Surgeon,after all stuides he did
and treated her for PN. Well you have a Herniated Disk,odd at 80
but the Back Dr. will cure you...huh...Don't make another appointment
because you will be cured. She wasn't,she died 4 years ago,he still
asks how she's doing.
4 Not everybody has insurance to go to Mayo Clinic,John Hopkins, Chicaco,
Cleveland Clinic. Or there insurance will not let them out of the stste
your in. By the time I got her into Barnes for her PN,she had a rare form
of Breast Cancer..
Which makes me wonder how many people in small towns and rural areas
suffer from PN..Or other things,there has to be a change, and don't say
they can move,well not everybody can afford to... Sue

Well, I don't have a Neuro......I have a fantastic Rheumatologist! He listens and has sent me for ever test imaginable and diagnosed my Neuropathy and Myopathy. Some of us luck out the first time.....some don't. I'm lucky that my insurance covered him....I know some who have lousy insurance and are still suffering.....and we live in Houston...BIG city!

I found an excellent article on the Neuropathy Trust website entitled: Peripheral Neuropathy: Getting the Best out of the Medical Profession by Dr Simon J. Ellis.

Go to this site and scroll down the page and you will find the article.
http://www.neurocentre.com/pn.php


Some of the attributes which I appreciate in a good specialist:

Their ability to listen and two way questions.
Genuine answers - not rubbish answers like "how long's a piece of string"? or another "don't fix what's not broke" or "you've seen too many sunrises"!
Acknowledging what's been said.
Thoroughness of note taking and testing.
Explanation of diagnosis, treatment and other things pertaining to the disease course.
Remembering you when you come back.
A respectful two way relationship.
Not giving up on you!

#1. One who gives you time, isn't rushing to the next patient--listens to what you are saying, really listens--a personality helps!!!

#2. One who questions you about why you think you have something that is irrelevant to why you are seeing this doctor--sometimes I swear these doctors try to distract you away from your purpose of why you are seeing them and I am not sure why they do that. My first visit with my neurologist was a learning experience for both of us, more so for him. He questioned me as to why I think I have celiac disease over and over, and finally I told him, "It doesn't matter if I am celiac or not, I am gluten intolerant, I will be gluten free for the rest of my life--now, lets talk about my neuropathy!" It's the not hearing what he needs to hear that bothered me most.

#3. One who is totally uncaring while examing you--the ones who treat you like you are an object and not really human. I had one do the needle part of a nerve conduction test--he did say, "This may hurt." Yet, then he broke the blood vessel, which is very painful, he didn't say a word. That's uncalled for.

Doctors are people too, not Gods like some of them think they are. Many of them need to come back down to earth and remember who puts them where they are.

Good OR bad?
 

I think this applies to ALL docs....

First, good site Megan!

1) Any and every doc should be willing to listen to a concise summary of WHY you are there - and not interrupt within reasonable period (isnt the usual interuption after about 15 seconds)? , then ask pertinent questions and know the tests to start with, etc, if they dont know they need to admit that to the patient and research or refer them to a doc who should) Take a list, a summary, whatever... but they need to listen to the patient and be receptive to our reserarch - not be glancing at their watch. They should treat one as a human being - they are professionals - so what - so are all of us in our field - we deserve respect - a handshake in introduction - if they want to call us by our first name ASK us first - dont assume - how would they like if if we called them by their first name?????
2) Any indifferent doc barely looks at a person - doesnt listen - doesnt read chart - and often brushes off important details you needed to tell them.... they need to care about the patient's well being - thats why they are getting paid....
3) Across the board for all - arrogance and indifferance.... I dont care how busy they are - I know if I treated people when I was able to work how I've been treated by some docs - I'd have been fired... as would almost anyone in any other profession... lousy docs dont care - say they are rushed (which I'm sure they are - as are we all) - and somehow feel they are able to bypass common curteousies and due diligence, often at our financial and most important - physical expensive...... If they dont like what they are doing - they need to change professionals.... its often said that docs get hung up on their power -and many many do.... no matter how lousy they are......

Thats how I feel - I've seen great docs and I've seen some that have very appropriately since lost their licenses to practice - and it was obvious in the way they treated people. There are many in the middle - good and bad in every field - and thats where we the patients FIRE them or form a good bond!

Please allow me to take a crack at this one!!!
 

I will only comment on #3.

We have had 18 years of going to doctors and getting pooh poohed on every question. Especially when I told them that Alan's mom had GBS. Absolutely every one said "oh it can't be connected to CIDP".. Really!!!!

The very best one was the neuro who spoke at one of the neuropathy meetings and when I asked her "what would you say if I told you that my husband's mother had GBS, would you just say automatically, "Oh that can't be connected, you can't inherit neuropathy, blah blah??"

She replied "I would never be so arrogant as to say such a thing". SHE ACTUALLY SAID THIS. I loved this doctor. She listened.

And what about when Alan took a blood test for Lyme (which no one ordered in 18 years). And two our of the 5 came back positive and when I questioned this, I have been told 'oh, it means nothing".

Well, it doesn't mean NOTHING to Alan. This man now thinks he has Lyme Disease. He watched a tv special and he has the symptoms. This girl test negative for all five things that are in the test, she then went to Spain, they took 3 vials of blood and guess what ??? She has Lyme Disease. They gave her antibiotics for over one year and now she is symptom free.

Do I think Alan has Lyme? I have no idea because we dont' have any information yet. But you better believe that the next doctor appointment that involves blood tests, Alan is telling his opinion to the doctor and hopefully they can run a better Lyme Test or take 3 vials of blood or do WHATEVER they are supposed to do to make sure Alan does not have Lyme Disease.

He is convinced that he has this. He said "yeah, I know I have autoimmune stuff going on, my theory is that it's the Lyme disease that caused it".

So we are still pursuing this avenue.

Wouldn't it be a *****, if after all we have done, that this man turns out to have a thing that could have been fixed by taking antibiotics??

I'll update.

Melody

To me, a good doctor is someone who doesn't overprescribe medications and tests.

Hi Mel

I have had Lyme. I distinctly remember scratching off a tiny scab, which was a tick, that I didn't know was there...a few days later the site got hot, then red, then over a few weeks, turned reddish purple, grew to about 4-5 inches in diameter and the center cleared out. I felt crummy, but even way back then, 14 years ago, felt crummy. I went to the urgent care clinic, told the doc I had Lyme and he laughed..."Where do you have this Lyme?" Well, I stood up and showed him the back of my thigh and there it was in its glory...He said, "You do have Lyme Disease..." Out he went and had the entire staff in to look at the rash....classic Erythema Migrans. They took my titer and it was rising, it was still below the cut off, but getting up there...then he gave me oral antibiotics, Amox 500mg three times per day for 20 days. That aborts any further immune response...in other words, your immune system doesn't make antibodies anymore once you start the antibiotics.

Rash went away, I still felt crummy but my titer never reached the level it has to reach in this state to be considered Lyme, even tho, I am a diagnosed and likely logged case of Lyme.

I did get more treatment 6 years later for over 6 months, so is my PN due to Lyme...who knows. I have a 5 positive IgM bands, but in our state IgM is not considered. It is in New York. All a positive response means, it that you were exposed to Lyme or Borrellia Burgdorferi and your body produced an immune response.

Glenntaj knows a lot about immune mimicry and his theory holds some water. I have researched the heck out of Lyme Disease for over 10 years and yes, it can cause PN but there is no research out there that says treating post Lyme with antibiotics will stop PN. Also, they should have looked for BB on PCR in Alan's spinal fluid. My spinal fluid is negative for BB and this point, and PCR looks for proteins present in the actual bacteria.

Again it is a huge bacteria, a real monster, and there is a ton that is not known about it....

I wish I had not gotten Lyme Disease, but, not much is made of it here in terms of my neuropathy.

Cyclelops:

Get a load of this. I just went back to all of Alan's tests and I have the Lyme Test in Front of me. That day they took blood, and what is in front of me is 5 pages. At the top right of ALL THE PAGES, it says PARTIAL.

So I went to the last page and it said"

PRELIMINARY REPORT.

This test is delayed because reagents are unavailable from the manufacturer. Results are expected by 12-28-06. This test was developed and its performance characteristics determined by Quest Diagnostics. blah blah blah.

So I said to myself. "okay, this is a partial result. I want PAGE 6.

I got on the net, got the phone number of Quest Diagnostics in San Juan Capistrano, CA. and spoke to the Lab Results guy.

I gave him the specimen number on the top of the page. He pulled up Alan's test results and I asked him "how many pages do you have?" and he said "oh I have 6 pages". I asked him "what does page 6 say, because I only have 5 pages and I need to know what it says on Page 6, if it says "yes, this guy definitely has the Lyme Antibodies, or it might say: " In our humble Quest opinion, this guy does not have Lyme,"

Want to know what he just told me???

'I'M NOT ALLOWED TO GIVE YOU ANY TEST RESULTS OVER THE PHONE"

So I said "listen to me, my husband has had neuropathy, arthritis and lord knows what else for 18 years, I never got page 6 of this test results, please at least tell me what the last thing on page 6 says'.

He said "what I will do is fax it to your doctor's office right now". So he did."

The doctor is not there right now. Won't be there until Wednesday.

I again said "You really mean, you can't tell me ANYTHING, anything at all what it says on Page 6, which is what it's my husband's right to know what this test says??"

He said "it's a violation of law for me to tell you anything over the phone".

He wanted to page the doctor and everything. I said 'if you think I'm going to bother the doctor on News Years for a year old test, (that I should have been given the final results on anyway), well, I won't do this. There is no reason to do this and it will only annoy the doctor. I know this.

So on Wednesday, I'll take a short bus ride (or Alan will), and we'll see what Page 6 says.

But after reading what you said, am I to understand that even if Alan was exposed to Lyme and had the antibodies, that it's too late for him to receive antibiotic therapy? Is this what you are saying?? So it actually might be found out that Alan had Lyme all this time, it did the damage, and there is nothing they can do about it? I mean, he was getting IVIG, (we won't know about approval for this year yet).

The whole thing confuses the heck out of me. I was under the impression that if by some magic, page 6 says 'AHA, THIS GUY HAS LYME, HE SHOULD BE ON ANTIBOTIC THERAPY, well, I guess that's not the way the cookie crumbles, is it??

thanks.

Melody

Neuros from hell
 

One was the director of the emg/ncs lab at a major nyc teaching hospital. He performed a lengthy series of emg & nerve conduction studies, blood tests, the usual walking on heels/toes, etc. Came up with no definitive dx. Prescribed Ultram & sent me on my way. I go back about 6 weeks later with more questions & to try to coax a dx out of him. His response: “Well, since your sx are worsening, we need to repeat all emg & ncs.” No surprise that his instant response was to repeat tests which are the sole focus of his lab & its financial wellbeing. Not listening to the reasons why I returned. Hearing what he wanted to hear. I hadn’t claimed my sx were worse…I just wanted more info.

Another at a different teaching hospital had the “fellow” interact with me. His only role was to fly in at the end of the visit and have me repeat all the info I had already given to the fellow. Much too Godlike for my taste. No continuity of care (the fellows stay only one year). Treated like a lab rat; not as a human being.

To date (8 years) have not found a “good” neuro. About a year ago the chief of neuro (famous cancer center) said I have fibromyalgia. My rheumy totally disagrees. Says I have Polymyalgia Rheumatica and that I’ve had it for 8 years!! Because I am pre-diabetic, I have to carefully monitor prednisone intake (it raises blood glucose) but I take nothing at all because I have no one to oversee this regimen. I have an app’t in Feb w/ a new endocrinologist from whom I expect very little but fervently hope he may have some answers for me.

I know I was tested for Lyme in the past but it may be time to re-test. No doc has ever suggested that Lyme may be a PN factor in my case.

Megan: Thanks for the Neuropathy Trust site.

Summary of whom to avoid:
MDs with serious God complexes (arrogant, interrupting, dismissive of symptoms/feelings)
Unnecessarily repeating tests, especially for the sake of financial gain.
Pill pushing.
Narrow focus, uncreative, cannot think “outside the box.”
Worst of all: no thorough knowledge of PN

Hi Mel...

Having antibodies to Borrellia Burgdorferi is like having antibodies to Chicken Pox, or measles or flu.

It could mean he COULD have an active case.

It could mean he had it long ago, and still has antibodies.

That is the basis upon which we base all immunizations....growing antibodies to a given disesase....this is why we need tetanus shots every 10 years....our body seems to make antibodies for about 10 years then we don't have enough...so we need a shot...

Lyme antibodies can mean an active infection, and they need to look at Alan and do more tests....or it can mean he had Lyme at one time, is over it and now has antibodies to it. PN and GBS are linked to Lyme.

There is incredible controversy regarding Lyme and I wish that when I had it, in 1994, I had insisted on IV. There are downsides to IV treatment, one being gallstones and other issues as well. It is possible that the new oral antibiotics are better than back then...I am not going out on a limb here...I really do not know.

It is conceivable that if you live in NY and have been in any natural areas, you sure could get Lyme. We have it pretty bad here in WI too.

They likely will do some PCR testing....just to make sure...they probably already have done it. I would think that it would show in a lumbar puncture as well.

Now, you have the issue as to when Alan was exposed...is it recent, is it active? That is what the docs need to sort out.

Lyme is a huge mess...I believe diagnosed inappropriately in a lot of people, and missed in just as many. I wish I could give you more direction on it...but doctors have lost licenses for treating it, some should have, others should not have. Most docs won't touch it with a ten foot pole unless you have definitive proof you have it.

The lab is obeying HIPPA regulations...they have no choice. They can't give you results...what if you were not who you say you were. They would get sued. Wednesday is fine, unless Alan has severe symptoms, such as fever or Bell's Palsy or change in consciousness.....then call the doc, it is a medical emergency. If he doesn't feel much different, Wednesday will be fine. Lord, I have lived with the specter of the disease for 14 years, and yes, it creeps me out to think it could be lurking, then on the other hand...it might be gone same as the measles.

Lyme does cause a great deal of havoc with the immune system and I have to laugh after two series of Hep B shots I never seroconverted. I am the seronegative queen!

Oh....one more thing....no doc will ever tell you your PN is due to Lyme.

It is in my history that I had it...but I do not talk much about it to docs, as they will visibly squirm in their chairs, and you may end up losing a doc you like....as I said...unless they find an active case, there is likely nothing much they will do.

The most definitive test is spinal fluid PCR, and I had that and it is negative now....which in the world of mainstream medicine means, I do not have any evidence of the bacteria in my spinal fluid...therefore, I do not have the disease.

If you get into reading Lyme literature, you will read the bacteria has about 30 different states it lives in...several plasmid forms and a cystic or I think better stated as a spore like form.

I have had credible people tell me that there is a lot they do not know about BB. My current doc, shakes his head and says, "We really do not know"...and likely antibiotics won't help much and would likely mess up my intestines more...(which I do not need.)

I admit there are stories of people, who have just about died FROM the antibiotics and I think...no wonder you feel better now! After all the years on antibiotics you would have to feel better being off of them. If you are on antibiotics for two years, you forget what it is like to feel normal. I do not know how people survive that many years on it...I know what a month of it does and it ain't pretty.

Speaking of...not to highjack this thread...but some comments came up regarding Erythromycin for gastroparesis...the dose I take is no where near what you get for an infection....it is a tiny amount, and in me it works as a gastric stimulant. It won't work for every one. I use it as I can't use antidopaminergics such as metoclopromide (reglan) or other ones. Some people with certain kinds of arrhythmias can not take erythromycin (those with prolonged QT syndromes). The dose for gastroparesis is very small and shouldn't interfere much with absorption of nutrients.

Oh my god. Alan is standing here right next to me and going {holy (you know what). Because obviously, they can't do anything after 15 years.

And that's how long Alan has the PN...15 years. He got a fever when he was 33 or 34 years old. No doctor knew what it was from. They put him in the hospital for 10 days in isolation and ultimately he was diagnosed as having a Fever of Unknown Origin".

Now if this was a reaction to a tick bite (and how could we ever know if this is the case?) We can't, obviously.

So on Wednesday, we'll call up Dr. Fred and see what Page 6 says.

I do believe it is too late for the antibiotic therapy.

Or does anyone out there who is more knowledgable than I am.... if they run another Lyme Blood Test and it comes out (more positive Bands), I mean, what do you think a doctor will do????

Probably nothing because it's 15 years already.

Why on earth didn't anyone think to test him 15 years ago???

God, the incompetency of the medical system is absolutely astounding.

thanks for listening. and Cycle. thanks much to you.

Melody

Thanks all for responding!
 

I do hope others will share their experiences and maybe, somehow we can bring this to the attention of all neuros who need more 'sensitizing'?
My very first neuro was 'benign' at best, He had done the basic MINIMAL blood, urine tests, MRI [no spine] and declared that I had to 'live with it' despite my expressed concerns that this old 'plain' neuropathy was marching towards my torso at an alarming [to me at least] rate....
After six months...I realized that I knew NOTHING about what a neuro is, does or should do. I was not internet conversant, but I'd gotten the PN handbook [now a dated classic, I think] and proceeded to learn the internet...tho sitting and typing were BIIIGG issues I took a couple quick and fast 'net courses...and then found the 'old' board..I simply sat and read all that others before me has suffered and I knew I'd found a place that UNDERSTOOD!
I then realized, not netwise, to use my medical plans' approved 'preferred' docs lists...I started calling. [after 2 other docs I see regularly for other stuff, went HUH? to Neuro #1's attitude] I found a neuro for a second opinion, who listened, especially about my fears on the progressions and how the current med I was on was destroying any life I had....Then rite off the start, new script, and the battery of MRIs Blood works and nerve conduction tests I should have had to begin with! As much as I appreciated this neuro, the progression was well, progressing..so, On to another opinion! I got by luck the head of the neuro dept at a leading area teaching hospital...He ordered all the autoimmune blood work and some other MRIs etc to rule out even other things...Spinal ensued at my current neuro's office and even more blood work ...three weeks later diagnosis and on to setting up IVIG! Soo, the second and third opinions were my charms. It was only after I'd been diagnosed that I'd gotten computer literate enuf to find sites such as this...I go to my neuro appointment, I get there early [I try to be well-trained] I expect to wait, and I KNOW that I am 90% of the visits going to get quality time with the doc. I have had to see 3 other neuros for other issues since and One I love, the second I'd tolerate, the third I'd stay away from as he approached me with all of those 'pre-conceived' biases rite off.

The BEST way to approach a new doc after seeing another has been in my experience: We don't seem to communicate well. Surprising how the new doc will 'nod' and just go on. W/my current neuro, cannot tell you how many other of his current patients are former's of that first one! When one has to 'wait' extra time in a room, folks get talking!

As for the Lyme's and neuropathies? Maybe the Mods could and really should pull parts of our posts out an make it a new thread. WHY? IT Mimics lots of PN issues, and vice-versa....It deserves a discussion on it's own. I respect Lymes' I know many who have it...or mite have it...in our area more folks have it than are truly diagnosed. Gee! I've been even tested for West Nile! Neg of course, but one can never tell.

Onward, please folks...Put it out HERE! Some doc's gonna read it! They need to know how we feel about THEM! They aren't only docs, they run businesses and have staff working for them who depend on them! It's a multi-road intersection - and we are the key traffic! Hugs to all! - j

Mel

Alan is getting IVIG, that helps CIPD.

I have axonal neuropathy....its a different bird.

They have people with Lyme who HAD treatment and still get PN....they can't say what caused the PN.

If Alan had Lyme 15 years ago...about the same time I had mine....1994 was a banner year, ALAN likely had intervening antibiotic therapy since then. I have been on antibiotics for sinus infections, a doozy wasp sting that turned into cellulitis, and for a number of other reasons. While he was sick back then he must have been given antibiotics..I can't picture them tossing him in isolation and not medicating him for just about everything.

I do not think you need to worry yourself or Alan about this. A lot of people are Lyme positive and do not have active disease, and a lot of people who had Lyme with adequate treatment still developed some type of post lyme syndrome. One of eight people waiting for heart transplants test positive for Lyme....again, a lot of people probably had it before any one knew what it was.

I am sure they considered Lyme in his diagnosis....if not, well that is another matter....most neuro's consider Lyme...it is standard.

You can relax and have a good new year's eve. I think Alan is getting good treatment with the IVIG....plus I bet they give him antibiotics for his upcoming foot surgery to boot.

just to get this thread back on track and on topic. if you are wanting to reply to the lyme's post, then copy it and start a new thread. this has gotten confusing to some of the members.

:grouphug:

Mel and Cyclops
 

I have mentioned I was a rock climber and went into caves,with my
dear Children and Mo. is a really good place to get Lymes. 7 yrs. ago
well C. explained exactly what just above my right ankle was like.
We were on are way to visit my Mom and stopped at Urgent Care,
the Dr. said I would bet that is Lymes D but I can't test here,he got
me into the Infective Disease,it took 3 weeks,I was put on oral antboctics,
until I could she him..When my mother saw that big ugly odd looking
huge ring she screamed..By the time I got to the Dr. got the same
thing as Cyclops..Now it's I just don't know and I don't know either.
But will bring it up again.

Meg that imformation was very good.. And Kmeb you always amaze
me with you wisdom...I have fired Drs.,some people don't know
you can...I can now say I was hurt badly by a Dr. he lost his License
to practice in Mo.Had to pay a huge fine,but never enough,he hurt many.
But they can lose there license in ome STATE and end up in another.
My Daughter said not to say more,she's a Attorney ,she said check
on your Dr. After what he did I was stunned,I was a nurse I knew this
happened,but it's stilll shocking to me,

My big grip with Neour's when they see you have Diabectes WEll look here
no tests needed you have your reason..

Well I have a great Neuro now that ,takes tests. Mel if she had heard
what you said about Alan ,,she would take it serious and calmly checked
I'm talking about what you wisely brought up about his mom..

My Mother and Aunt got PN in there 80's. My Uncle took my Aunt to all
the best hospitals,but the Drs. could not explain to this 80 year old
man PN. Now my 91 yr. old Aunt has it in her feet she has been taking
b12 for 10 yrs. These were strong women who outlived there husbands.
Two are still alive one in a assited living home she's in a wheelchair so
she won't fall,my 91 yr old aunt still live in her home,her feet hurt and her
knee,b12 and on occasion Alieve...I'm 61 I wish I felt as good as they
do,oh my Cousin 61 feet are burning now hmmm. But I really like my
Neuro she calls me by my first name when we see each other out of the hospital,amd I call her by her by the first name outside of the hospital.

May we all have a good YEAR,I for one don't want it worst.. Bless you all
good friends and i hope we have a snow storm so I don't have to go out..:)
Hugs to all Sue

1. It helps a great deal if a neuro is willing to treat me like an intelligent woman who also has cognitive dysfunction. In other words, have a proper discussion with me about my condition and be prepared to provide a definition once in awhile when I forget what something means or what it's called. And if a neuro doesn't know something, he/she should be willing to admit as such and make an effort to find the answer or direct me to someone who can.

2. Indifferent neuros are ones who, like shiney sue said, see diabetes on your list of diagnoses and decide that it's the answer for everything. Or blame everything on fibromyalgia without ruling anything else out. Or when their initial tests come back inconclusive assume that you are a hypochondriac and look no further.

3. The worst neuros are the ones who haven't cracked open a medical journal since they got their degree and have no interest in learning anything current. The ones who tell you that since a particular medical condition is rare that you must not have it, even if your symptoms and/or tests point to that condition. The ones with the God complex who will not let you tell them about important studies relating to your condition, who tell you that everything on the internet is garbage, who treat you like a hysterical woman even when you are being calmly assertive.

Hmmm....can you tell I've been to more docs in categories two and three than in one?? :p I'm perfectly willing to accept when a doc doesn't have an answer, but I expect them to at least to make an effort before they reach that conclusion.

fanfaire
:cool:

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.

Dahlek, sorry this so long
 

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

Docs
 

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? :confused:

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.

Guess I'll weigh in too...
 

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

Oh Mel! Is that guy still
 

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.

Gotta ask?
 

Did you like him? YIKES:yikes: - Any which way, the Yikes applies.

My problem w/my last O/V was I'd gotten the time mixed up..and got there a 1/2 hour early...so had to wait an hour..which is what brought up the 'conversations'...
I guess the distinctions are clear if folks don't mind waiting VS get mad at waiting I've waited 1-1/2 hours once because he was held up at the hospital w/a patient following am rounds [we're talking early here?] I didn't mind at all, knowing that it could be ME sometime...tho not soon, IF'n I can help it?

I also figure that there is some kind of 'kindergarten' attendance sheet kept in all doc's offices...as to whether you show up on time or late....I show up early or on time, in the rare hope that there's been a cancellation or the like and I could get ahead of the game. Wishful thinking I guess, but sometimes it does work? - j

:rolleyes:I wish that I could find a good one to compare with,but I could give you all a good run for your money on the bad one,s.This is going to be my year things are going to happen.~~~~~~~Liz M

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