Premise (or is it "preface"?): I am un-dx, so I really have no clue. Whatever the answer is hasn't been something I've correctly utilized, or I'd be somewhere by now, right?
That out of the way, I'd suggest assembling a timeline listing symptoms, when they appeared, worsened, remitted, etc., with as little reference to the other doc's ideas as you can include. A reference to treatments and their effects, or lack thereof, with regard to those symptoms would be appropriate, but on the basis of the instructions you've explained, I'd put in as little as possible, even nothing, about the past docs' theories, explanations, diagnoses, or dismissive attitudes -- except I'd be quite plain about the medical professionals (if any in your case; sorry, but I can't even remember my own details anymore!) who have found you to be of sound mind and not imagining all this ... stuff that we go through.
Please, folks, add to my suggestions; this lady deserves all the help we can give her.
When I was accepted to a study at NIH last year, not yet dx, I started off with a statement that went like this:
"I'm coming to you after seeing 2 other neurologists. They were not sure if I have MS and one even thought it was conversion disorder. I am open to whatever opinion you all might come up at the end after doing your tests and exams and MRIs."
That pretty much summed up what I said and the neuro was pleased to see that I wasn't expecting a dx from them.
I see this new neuro appointment as an opportunity for a fresh set of eyes in looking at your history. He is starting off on a good foot in my book in that he is only wanting to see the hard facts i.e., labs and MRI, and not the notes from someone else's opinion. You made a good move to seeking out this doctor and getting his take on everything.
Let him talk, but advocate for yourself as needed. Don't be shy about it because who cares more about getting this doc interested in your case than you yourself.
I wish you good-luck, not that you need it as you will do fine with handling this.
I'd be up front and honest, tell him you've come to him because your life over the last few years has been plagued with [list 3 main physical problems] and increasing cognitive issues. So far it has been difficult to get a dx but I have been open to all possibilities and even saw a psychologist to check if i could be suffering from a psychological condition. so now thats out of the way I would like to know what is causing all this and if anything can be done to improve my quality of life.
LA, do not minimize the effect all this has had on your ability to do what you love - raise your family. Not seeming very upset by one's symptoms is a tip-off to many doctors of a conversion disorder - it's called "La Belle Indifference" or the "Beautiful Apathy". I like both JJ and Julie's suggestions. Showing worry about what is happening is natural and expected. Any doctor that assumes that your anxiety over losing function is DUE to anxiety is a complete arse.
Tell him briefly that you have had so many opinions and you welcome his, but also mention how much you have lost due to the problems. I would also say that you were affronted that some doctors immediately leapt to the conclusion that mere stress has caused this.
Since he has made it clear that he wants to make his own decisions, do not try to take over the visit. Let him ask and form his own picture of what has happened. Good doctors have their own order and rhythm to obtaining information.
I really don't think that we can change a doctor's basic perceptions. They are who they are. There are a few things though that patient's do that can really set off many doctors. The most important is emphasizing every, little symptom, every time it has happened. I really think it is most effective, if the doctor asks you to describe in your own words, to emphasize the main 3 or 4 things that have been most disabling, and mentioning that there are other more minor ones that are not as problematic.
What are the 4 worst things that have changed your life?
What are the many nuisances that are bothersome, but that you can live with?
In my case I would describe the increasing difficulty walking, due to right-sided weakness, the worsening incontinence, and the fatigue that have destroyed my quality of life. Then, as a brief addition I would talk about the episodes of facial pain, the paresthesias in my right foot, the word recall problems and short term memory problems, the restless limbs,
Do not EVER just make a laundry list of 20-odd symptoms and ask him to read it.
For him you can say that you have a timeline to keep everything straight in your mind, and offer it. This should be of the shortened doctor version, not the long prose diary form like a journal.
I think what was said is very good advice. I was one of those persons though that listed a very lengthy list of symptoms starting from my head down to my feet. I lucked out with a good neurologist who was an excellent diagnostician, so it didn't matter that the list was so long. My neuro loves challenges and I think he looked at my comlex medical history as a very interesting puzzle to solve. I'm finding from other's posts that these type of neuros are quite rare.
I think what helped me was having a family member in the room with me to emphasize how I changed. Some things I had forgot to bring up from being so focused in addressing things. Just remember that if by bad fortune (which I doubt) that you get another dud, you can start again with someone else.
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