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

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 's and encouragement that you can deal with this and future situations assertively and positively! - j

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!

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.

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

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!

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.

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