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starting from scratch

I have an appointment with a neurologist who wants nothing but my labs and MRI.  He wants to come up with his own opinion without the notes or anything from the other doctors!!

I am very happy about that!  How do I conduct myself in a way that does not make this doctor think it is psychological?  Or is there a way?

I was just being my quiet friendly self with the other doctors.  Not wanting to seem overly distressed about my situation.

My appointment is March 24th.  

LA
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751951_tn?1406636463
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.

Blessings, my friend.
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233622_tn?1279338505
I don't know but I thought I was somewhere but went back to nowhere. = {

I thought I would do a timeline also.  I will only focus on the major things.  One being my vision and the other my legs.  

I have other issues but those could be cause by a variety of things.  

The last doctor made a point to say I was given Provigil but was not taking it.  

Well I DID take all of my samples but who can afford the $180.00 it was going to cost me to get a script filled every month?   Well, the doctor could of course but not a person with a normal income.  

Thank you so much for your support.  I am so happy to have this new doctor.  He was recommended by my niece's mother in law who also has MS

LA dx'd 2008

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559187_tn?1330786456
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.  

Be strong and confident.

Julie
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987762_tn?1331031553
Hey La,

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.

Food for thought!

Cheers.....JJ  
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I agree with JJ, focus on the main smptoms that bother you the most and finding answers for those from this doctor.  Be confident in yourself, but be open to suggestions.
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147426_tn?1317269232
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 suspect that he will guide the fact-finding.

Quix
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I like him already by not wanting other opinions to influence him.  (he can think for himself, has a brain and not afraid to use it!!)  

Good luck!!  
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429700_tn?1308011423
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.  

Best of wishes,
Deb
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233622_tn?1279338505
Thank you everyone so much for the help.  It gives me a clear picture and now I know what I did to set of this idea that it is in my head.

I was very relaxed and calm about it.  I did not want the doctors to see me upset so I wasn't.  I have a great support system but that does not change what is happening to me.  

I went to my sons wrestling match on Tuesday and had to nap 3 hours yesterday.  

Today is full of stuff for the kids, which I totally enjoy, but I pay for it on the following day.  

I asked my doctors office to send my PT, OT, swallow study, and psychiatric review to this new doctor.  I did not want to have to repeat these.  Are the PT and OT reports an opinion?

I thought they were more like evidence rather than opinions and that they would be helpful.  The doctors records dept were not so sure.

LA
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233622_tn?1279338505
bump--  for the last questions i asked.

la
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