Dealing with New Doc Questions and Help?
 

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..!:confused:

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 :)

Personality
 

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!:)

read this twice
 

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. :rolleyes:

i had an emergancy c-section with my son. was not put under nor given any pain meds until after they had him out. :eek: 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.

Time and thought...
 

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.

Thanks Everyone
 

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.:winky:

Hi Kmeb:

You sound like a sweet soul who doesn't want to cause any trouble nor do you want to make anyone uncomfortable. Am I correct??

You have to learn not to smile, and you have to learn how to frown.

I mean, what is a smile??? A frown turned upside down, right??

So the next time you really feel lousy, before you step up to the nurse's desk, take a breather, think how you feel, keep your face still, and show the true nature that is in a person's eyes. The eyes never lie.

If you don't feel well, let your eyes do the talking.
You can even say "I'm not myself today, I don't feel well".

That sentence alone speaks volumes.

Take care hon.
Melody

Doctors are strange creatures - conditioned to a
 

different world in my mind, similar to military in codes, practices, doctrines and abilities in meshing it with real life people.

You ARE going for a new opinion. You are [sort of] also doing an interview. As to WHY you are doing this? You want a new LOOK at YOU where in the past you've gotten inconsistent appraisals or simply been told that nothing can be done. You aren't a quitter, you are in pain, you would like some HELP! Plain and simple.

As to why? Well, maybe you weren't communicating with prior docs or getting communication FROM prior docs in a way that lead to any progressions for treatments, only dilemmas...I think I can clearly say that ever so many folks here have THAT issue either now or in the past BIG TIME!

As to what, I agree that what you say at the time of the visit is key...Short and sweet, emphasizing the pain & balance issues--falls, cuts, etc?...and what has or hasn't helped in the past. As well as potentials for continuing disability...and ACCESS to other docs, tests, economies, and physical stresses of doing all of the afore mentioned stuffs. I would THINK that test results would tell LOTS if not all? But then I'm not a doc?

I guess the absolute basics should be stated, provide back up as requested? Just, ALWAYS be honest-even if not in detail. You can't be caught in a lie if one was not made. I believe you would not ever do that, but sometimes we tend to understate or overstate. I've always found that blatant simple honesty has been my best 'weapon'. What is harder to gage is any one doc's 'receptivity' to a given person's comments and you can never tell what kind of day they have had prior to seeing you that day...

We all have been on the 'merry-go-round' of docs....It's a frustrating process at best? I can only offer multiple :hug::hug::hug::hug:'s and encouragement that you can deal with this and future situations assertively and positively! - j

Dahlek
 

Hi - thanks for thoughts... no - I'm in no way lying about anything - my mistakes in the past if anything is not emphasizing how disabling all this is, even just the basic PN symtoms (I assume they know about the constant tingling, etc. and really dont talk about how just that drives one nuts) (I dont even think I told my neuro about the fall last year out of the shower due to loss of balance, and I did major damage)... my docs have all my tests (as do I) - which are consistent from day one on the nerve damage (both NCS and sural nerve biopsy) - I think where it gets confusing is that other symtoms are so affected like my gut and back - and although they acknowledge the PN causes the intestinal problems - no neuro specialists around here in that - and GI docs either....

I do know that I only have on average about 15 seconds before I will be interrupted - so try to maximize the time - usually type out for any visit in the past current most important issues...

But again, first visit - I did ask and this doc does order IVIG - so thats a good thing... it will be a question of personality I think...

We'll see!:eek:

Kmeb:

I have a suggestion. Hear me out, okay!!! Know what I have done before I have visited a doctor. Especially Alan's neuro, and I have also done this to his podiatrists (and they thanked me).

If Alan has to go see a new guy and because Alan has had so many visits to various doctors throughout his 18 year history with PN, well, I once typed up a detailed (although brief and to the point) history of his journey. Amounted to a couple of paragraphs (not a whole page or anything like that, that probably would turn them off), but I would write down what Alan has been through and what we hope to accomplish during the visit. I then e-mailed this to the doctor's office (to his attention), calling ahead to see if this was permissible (it usually was). And if they didn't do e-mails, they most certainly did faxes. Now I don't know if you have a fax machine, but you do have the laptop and you DO do emails, right???

So what if, before you have a new appointment with a particular doctor, and you find out that his office does emails, why not write a little note, explaining how you feel and what you hope this doctor might do for you???

Hey, we all have to try and get these docs to look at life through the eyes of someone with PN. They don't have it, so they can't empathize, but they might just sit up and take notice if we communicate with them this way.

Think about it. I've been doing this for years. I once had my primary care physician say (when I walked in the door). "I love Melody's faxes".

I asked him "why?" and he said "because you know what you are saying, you know how to communicate and you don't waste my time".

He's a rarity, I know.

Melody
 

Hi - good idea - I actually have a "brief history" (that I keep updated) I always give to new docs, just a little over a page - that gets all the prelim questions out of the way - current problems and current diagnosis - surgical history - illness history - very brief social history - and meds (and allergies to the prior)... saves them lots of time asking me questions and they usually dictate it word for word into my chart... but never though about faxing on ahead! That would save time and help understand me more!

(docs out here have yet to give out their e's that I've run into!)

Thanks....

You are most welcome toots.

Just made a batch of blueberry muffins.

Alan's getting his IVIG today.

I shall be speaking french all day!!!!

OH LA LA

Jeez, you would think that a good experienced doctor would be coming across multiple types of personalities in their every day work and think that their evaluation should be based solely at the facts in your prior tests results not someone who has a chirpy personality but wouldn't hurt to drop the smile a bit by the looks of it, your posts come across here as an honest and sincere person and they should easily pick that up.

It probably is a lot to swallow first up for any doc and i would make that clear to him/her that you do understand that, but i would say that i am sick and tired of feeling like this and any help would be greatly appreciated.
I also think Melodys summary, would be an excellent idea.
I hope it all goes well for you anyway,
Brian :)

Saw the Docs
 

Met the new nuero first yesterday - let him totally take the lead... nice man - older - has lots off PN patients - he looked quickly at the few tests I had given him - told me I had seen very good docs and there was no question as to the PN and how could he help me (did ask why I'm changing - just said closer to home (which is true) and trying to find new group of docs that are - if he chooses to contact the other he can - but I said nothing more about that)... told him the main PN symtoms, that I'd like to get them more under control - the killer lumbar pain so he immediately ordered a lumbar MRI - and will also set me up for IVIG if I can find a provider (the one they use is the home agency that dropped my insurance.)... also referred me to internal med doc he works with and GI docs..... so went ok....

Oh - MRS D - if you do read this? - he suggested Ultram at low dose with Tylenol for PN pain - I get violently ill from opiates like demerol, codeine, vicodin, etc... I'm staring at the pills but havent gotten the nerve to try yet..... any opinions on this med in regards to people with similar issue?????

The fibroid exam was ok in that the fibroids are holding their own - not growing - but - physical part of the exam caused an incredible amount of pain that literally left me shaking for about an hour and the doc said - what is your GI doc doing about your guts - theres obviously a big problem here - told her nothing... shes not happy so may have an advocate to help me here when I see the new GI....

So going forward from here - setting up MRI appt - the next two weeks will be concentrating still on teeth issues, best case scenarios are root canals this next Monday (I actually am hoping they can do it) - then at least maybe we can get a semi-permnent fix...... if it cant be done - I stick I stem on my head for Hallloween and I'll a pumpkin!:eek:

Utram is fairly well tolerated...
 

it is not as strong on the receptors as opiates, so the nausea is not a factor.

It is actually recommended now for fibro patients and other chronic pain issues, because it can work centrally to turn down over firing nerves in the brain.

I just had a CE on it in the spring when I went to that seminar.

I think Bob uses it still (Nide) and Brian too. They both like it. So I would give it a try.

Good going with the Neuro!
 

HOpe this one is a 'keeper'!

Yes MRI's especially for the back and neck are well, times when I at least SUDDENLY have the urge to squirm when in the 'tube'.

Ultracet/ultram/tramadol...they seem to be interchangable on drug websites, but there is a distinction between the opiods alone and those with the acetepheminiphene....[That IS Tylenol, isn't it?] The combo seems to provide much more bang for the buck [in terms of nerve pain] and fewer side effects [as in UMMM constipation?]. Strangely, I've been on both straight Percocet and the Tramadol combo stuff and I prefer the latter much more. Fewer overall side effects and just enuf meds to take things down a notch or three.

Did you get a sample pak to 'try'? Far cheaper and easier to find out that way, less waste if it doesn't work well. - j

Re: Tramadol
 

I take it for my fibromyalgia pain...and I like it. I take the tramadol...that has no tylenol in it if I am right...the ultracet does...I asked for the one with out tylenol, I can add it or advil as needed so I don't constantly have it in my liver...I only take 50 mgs at a time usually about 3 or 4 a day and it feels better than codeine or less sedatining than vicodin, it actually gives me a little boost of energy at times. I did notice at times I would feel nauseous a little at first when I took it. Can't even hardly tell I am on it now I can drive if I am careful, I also take xanax so I can't mess with the cell phone...keep my eyes peeled or I find myself drifting off the road! I don't like the codeine meds, and have never been on anything stronger than darvocet or vicodin. It doesn't make me go to sleep either....I have never tried 2 at a time though I am allowed 2 every 4to 6 hours. I'd give it a try when you don't have to do much else. Seemed like when I first took it I felt it more, also makes me a bit edgy when wearing off. boy do I talk enough? Oh it makes me talk alot when I first take it too!!!!! My doc said to stay ahead of the pain, if I take it when in alot of pain it takes a while to get going....ok i will stop already!

So glad you found a good neuro...My local one is a real icy one. Am thinking of changing but am in middle of SSDI case so I may wait. he is good on testing but doesn't talk much at...all, its just too weird....h'e the one who sent me to the even weirder one at Hopkins.....!!!! I am not making this up!

I do have some really good docs. Maybe the new cardio will help me..I have been reading up on sleep apnea, and such, and waking up to shortness of breath is one of my symptoms, with the heart pounding,,,,,which can be heart related, maybe not neuropathic but not pyschiatric !!! sounds like you got a good one.

When i was taken Tramadol i found them to be really good, i had no noticeable side affects at all, i was on the Slow Release type, taken 1 tab every 12 hours.
Brian :)

Thanks
 

for feedback on tramadol - I decided to give it try on Tuesday so I'll be sure to have someone on call if any problems - (and Monday is important dentist appt)... and then hope for the best - as long as I dont get a reaction like I have with some of the other narcotic type meds - I'll be thrilled - as you guys know - the constant pain begins to chip away at ones soul after a while! My mind wants to do so much - and my body feels about 100 years older then my spriit!:)

(lilavia -right now I"m taking 6 to 8 extra strength tylenol a day (my doc knows this and says thank goodness I have good liver function) - which still does nothing to help my back if putting direct pressure on it - tramadol doesnt have tylenol but the doc said to try taking one with the med cause it seems to help)

Kmeb...
 

I just went to an Ebayer's home to pick up some glass cookware.

The gal had a severe spinal injury (car crash) and is using tramadol with excellent results.
She was very alert, sharp and holding her own very well.

She says none of the narcotics worked for her. I wish you could have seen her.
She was an inspiration at 70yrs old. I invited her to NeuroTalk, since she uses the net alot. So we may get to meet her.

I can understand caution
 

about any new med, especially when one has intolerances to many meds! For me, it's the SSRI's of most versions AND the Beta blockers...Trying new alternatives is a Hit-or-Miss territory? You get either loopy, drowsy, incoherent, fall down and pass out [with or with-out help around] and it all is down right hair-raising scary!

I have had numerous reactions from new meds/combined with the current meds and I have to encourage one and all to START any new med on a MONDAY or TUESDAY! Not a Thursday or Friday...as during the weekend, well, you can't get your key doc for love nor money! My reactions were bad enuf that I SHOULD have gone to an ER...but, DUH why wait 14-18 hours to be told to go home and 'wait it out'? And, in the meantime 'pick up' something 'new' from another patient there....Sorry guys...It sort of seems as IF one is making a martyr of themself....but--Reality intrudes.

Honestly I'd rather have the reaction on a Monday, ask the doc for a look-see and see the next day or day after and go from there...cheaper, easier, faster and a whole boodle less stress! Lowering stress and pain is what this all is SUPPOSED TO BE ABOUT, Isn't It?

Where are those who have the sympatico? Maybe we should make a 'secret' list? Sympatico seems to be missing of late... - j