This week I will be seeing a new neuro - my last neuro has seen me for two years - gave me ivig - and when he was in a good mood - decent to be around (when not - run) - also, good technically... due to the nightmare of this disablity review I just went thru (Fanfaire I know can identify with this - the company does all they can do hassel the docs on their end and he didnt want to do the forms to start) - I no longer feel we have a workable relationship.....

I have all tests since I got sick - the NCS/EMG's that show progressive damage, sural nerve biopsy, etc ...... I also have my LizaJane spreadsheets up to date....(but dont want to show up with too much info - whats appropriate here?) what I want to do is find a new doctor to work with on an on-going basis who will give me his opinioin - do anything else he feels necessary, etc... (I'm going to beg for a lumbar spine mri).... problem is - though not at the same hospital - these docs gossip - they make the View look tame - I asked my skin cancer doc last week (both she and her husband are docs and I've known her for 25 years so knew she would be honest) and she said to just ask him to please keep this confidential - and look at me as a new challenge - but she did admit that most often this is not done....

Suggestions anyone? I dont want to say anything derogatory about the last doc - he was good - but got weirded out with the disablity hassles and then downright impossible.... I need to go forward with my care - and need to find someone quickly as I can....

Appreciate any help... (I know my personality doesnt help - I had a very kind sincere doc stop me in mid-sentence once when I first got sick - he knew I wasnt feeling good at all 'cause he had just done allergy testing and I had gone into shock in his office but was still smiling after a pretty darn scary experience - he said its hard to tell I'm not feeling well cause I dont come in moping and crying).... do I need to not smile? Tape my mouth shut? Seriously, I dont know what to do..!

Hi Kmeb

I cannot understand what could be wrong with your personality from all the postings I have read from you. You seem to be very realistic and controlled and you certainly dont have to go in to see any medic with a grim face or crying.

I do so hope you find a new doc soon who will be able to help you. At such a long distance from you I really cant help - wish I could. Anyway you have my thoughts and prayers as usual.

Tony

Hi Tony - my personality - I've been told I'm very animated - talk with my hands, smile a lot, etc.. even when not feeling well at all - and it works against me in situations like this!

And I still do not know what to suggest. Do you have anyone you can take with you? Tell the doctor you are nervous. Put your hands in your lap and hold them together. Look at him and ask him to please help you.

Kmeb, I just don't know what to say. It's just a difficult position.

Billye

I have changed doctors and the new doctor never asked why i stopped going to the old doctor.....i wouldnt volunteer anything doctor wise, just give a synopsis of your problems and some history. As stupid as it sounds, i really think you should try not smiling while you talk to them, it sends a mixed message between your words and facial expressions.......you dont have to cry but being subdued about it i think would help.

Yup Kmeb--I am just like you, always with a smile. My primary doc tells me I always come in looking so happy and healthy, he just can't believe I do not feel well. I simply tell him that I do not have to make him feel bad simply because I do. I go to work with headaches that most people would not crawl out of bed with and I still smile--I just don't know how to act otherwise.

Here a a couple of suggestions. don't tell him anything about your old doc, but if you feel you need to say anything you can just say that you thought it would be helpful yo get a second opinion. I think a lot of docs feel flattered to be asked for an opinon (stroke the beast). I think he will genuinely want to see every test or what ever that you have had in the past. If you want to give him the spreadsheets, you could make it non-threatening by saying "This is a list of tests my friend had, and I was wondering if you felt that any of them would be appropriate for me." That way it comes across as asking his advice rather than suggesting he do something. But when all is said and done, we have to remember that we do not relaly have much control over how someone else acts or reacts and not take it too personally, but just move on. Of course, I have to counsel myself on this all the time, as I get very upset when I am treated badly. It is hard not to take things personally. But some doctor's are just jerks, no matter what we say or do. Best of luck.

(((kmeb)))

i know where you are coming from. smiling puts other people at ease. most don't know how to deal with a person who is in chronic pain. we smile at them to ease their discomfort and to also hide our pain.

then when we are infront of the people...dr's...nurses...that we shouldn't have to do this....we still do. then they think we aren't in a lot of pain.

i had an emergancy c-section with my son. was not put under nor given any pain meds until after they had him out. my ob said aftwards that it must not be as painful as he thought...since i never screamed or showed the pain. i wanted to grab a knife and rip his belly.

i have lived with chronic pain since i was 12. guess we need to learn how to show it.

going to a new physician with all that history you have, test history, etc, is difficult.

I'd make the visit short... Don't dress up or put make up on. Look sick if you feel sick. Look weak if you feel weak.

I'd quietly say something like: "I have a longstanding, exhausting, serious set of problems. I will leave this data with you to study. I need help, relief, and I know it is complex. " I'll come back for a second visit after you look over my case, if that would be helpful.

Give the doctor time to think about you. Keep any first impressions, quiet and subtle.

Appreciate all the suggestions - decided I'm going to take just a few pertinet tests but will let him know I have detailed info any thing he may want to see (I know all the tests I've had so if he suggests something - I can say yea or nay I've had that).... I dont really have anyone to go with me - someone is driving me but they dont understand or know my medical condition and no one sees me struggling wtih this daily - so better I deal alone I think and just try to be as subdued at possible (If I have to I'll sit on my hands!)... yes, I will ask for help.... I have a feeling he will ask why changing docs - but second opinion/closer to home I feel is all he needs to know.... (and I want ongoing care)....

And I think most important - I've got to remember - a complicated case cause of other medical conditions may not be something he can embrace or wants to take the time with, and, I may not like HIM.... so wont take anything personally.... (at least he has good Med School backgound - checked that out)......

Dakaota - yes - docs are just people like all of us - except hold a degree of power over our futures - and they abuse it at times... I gotta remeber.

Curious - I would have stabbed that doc!

Hey Joe - my doc who told me that I was sending mixed messages told me he thought it was cause of my profession (being in HR for so many years - ya gotta be "up" and give someone your full attention all the time for interviews,etc.. its very hard to unlearn that... but I'm trying - I still dont ask friends personal questions at times because I know they are "illegal questions"....)

Anyway, will do my best - be openminded - and see what happens... after that appt also see doc for more tests on fibroids that same day - so maybe will explain some of the other pain....

Thanks again.