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.