The proper care and handling of a neurologist

This is kind of a "piggy back" to Quix's post.  I think a person needs to be as well prepared as they can be before they go in (especially for first neuro visit).  So here is my list of things that has helped me (and this is just my opinion):

1: If at all possible know something about your neuro before you make an appt.  My  sister in law is a nurse (they are an excellent Dr. source!)  and turned me on to my great new neuro.  Try not to go in "cold".

2:  Be as factual as possible (try hard to leave the emotion out)  Have a list of six or eight "bullet points" that are your biggest issues.  

3:  Don't mention the name of any condition that you are concerned about.  Know your stuff, but don't let on that you know your stuff.  Ask open ended questions. Example:  if lesions show up and your neuro tells you they are nothing to worry about, maybe ask him/her "Oh, ok.  Well, what could cause these?  Should we follow up, or maybe check the rest of the spine, etc?"  If he is giving you "spin" this is the time in your head where you say "on to the next Dr."

4:  Look at the MRI report in the office with the Dr., and take a copy with you.  My second neuro said my 2nd MRI was "normal"  I said "Great.  Can I see the radiologist report?"  He hesitated a little, and then said "Sure, but there is something in there that I don't agree with".  He disagreed with the fact that the radiologist was pointing out that my lesions from 10 months prior were bigger,  had multiplied, and were consistant with Multiple Sclerosis.  Again, this is when you say to yourself "get a copy of the report (and your films!) and let's move on".    

5:  If they brush you off or dismiss you, try not to take it personally.  Just don't go back.  My husband says that medical proffesionals are "consultants".  I agree.    It seems the ego abounds in this area of medicine (my opinion) and if they don't know what it is they may not want to say "I don't know."  The first neuro I saw said my original lesions were "from migraines."  I told him "I've never had a migraine."  He was unfazed and said "well, they could be from anything".  And left it at that.  At that point I realized "he either doesn't know what to look for, or he won't admit it."  Again, move on.

6:  Trust yourself.  Try to be as factual with yourself as possible about your symptoms. Emotions abound  (at least for me),  and  It is a lot of work when you do not feel good and are scared, to start over with a different dr.  You must, if you feel you need medical care.  Maybe not in the same week; but press on.  It is not unusual to go through a few neuros before you find one that will help you. There are several on the board that will attest to this!

Well, I think thats all I have.  Anyone else please add to the list.  Again, this is just what I have found to be the best approach for me.  Hope I haven't ruffled any feathers (or cat hair, or fish scales), I just really want to help anyone that is flayling (sp) around to stay as grounded as possible during this time.  God bless you , Amy

[essdipity]

You have done a great job in preparing newbies for neuro visits. This subject has been discussed frequently here and certainly bears repeating from time to time as new people arrive.

It's really too bad that more than a fair share of neurologists have difficult (to say the least) personalities, but we have to deal with the real world, and this is part of it.

There are good threads on this forum about 'managing' neuros, making timelines of symptoms, what you should expect by way of a thorough exam, what are reasonable first tests, and many more. They get bumped to the top by many of us, and soon will stay at the top, with MedHelp's assistance and cooperation. I really look forward to this as I'm sure it will be a big help.

In trying to condense much of this into a nutshell, I'd urge patients to remember that neuros and all doctors are our employees. They are entitled to courtesy and a fair hearing. Patients are entitled to the same. Even though it's a tough process, there are certainly other doctors out there, so if you feel you are not being properly served, then run don't walk to someone else.

ess

[Heather3418]

Well said ladies...well said....

Heather

[Wobbly]

Thanks for this information.  I will keep it handy as I will be seeing a new Neuro soon.  The first one I saw, I think I had written down ALL my feelings etc and was so nervous about my spells and pain that I looked and acted abit out of it.  I want to feel comfortable enough to talk with the new Neuro, I only hope I don't get nervous again, they seem to just make me feel that way?  I know it all in my head..

I will only write down the top symptoms that I need to express and he hopefully will ask other questions... by the way... what if the exam doesn't show anything?  what happens next?  Do they refer to you someone else?  

Thanks again
Andrea

[Heather3418]

Sometimes when you go to a specialist and nothing shows up to tell you what's wrong, they will tell you to call the office, when some of your symptoms start showing up again.  That's happened to many people here.  Causing even more frustration.

If you have symptoms that are continuous and you know deep down in your heart that something is wrong, then by all means, seek out a second opinion.  

The hardest part of any diagnosis is waiting for the answers.  Since so many diseases and disorders have similar symptoms, I think we can all understand why it is sometimes hard for the (caring) doctor's to sort it all out.  

Patience is not one of my virtues, but as I get older and go through this thing called MS, I am learning to adapt quickly, to the unknown and unexplained.

Heather

[sllowe]

Adding on to the list:

7.   Bring someone with you.  Preferrably someone who has experienced your issues or changes   you and has seen them from the onset.  

      And, or, someone who can write notes, or chime in when needed.  This was particularly helpful and important in my case, even though I was determined to go alone, and basically forced to have a driver, and someone by my side.  This person was a collegue, had experienced and seen the issues and was very unbiased.  Wrote down notes exactly as they were stated by Dr. without personal opinion or thoughts interjected into them, etc., (as some may do if they are "too" close to you), and spoke up when I could not do so, or was unsure of my responses.

[Amyloo]

Excellent point.

[Quixotic1]

Wow, this is a very perceptive post.  It is a fact that we are dealing with physician's usually of a great amount of knowledge and intellect, but varying amounts of insight and compassion.  The ego of some neurologists cannot be overlooked.  Since we are there for our OWN benefit and not to "change the world," we should play the role of the patient seeking answers.  I totally agree that we should not suggest outright what we think is wrong.  They may ask and then it is appropriate to mention that others have told us some symptoms look like MS or something that mimic MS.

On being factual - Seriously people I truly believe that having written up a timeline of symptoms and prior workup is the most valuable thing you can do.  It should be sparse, but descriptive enough to tell the problem.  It should be quick to skim read - no long paragraphs.  The timeline serves several good functions.  First it really gives you a handle on all that you have been through and it allows to to give a history that isn't going to make the neuro start checking his watch and inching toward the door.  It puts a great deal of control in your hands.  Second, when your mind goes blank after a question - doesn't it always? - you can refer to it.  Third, if you are lucky enough to get a neuro who is interested, they will have read it or be reading it along and asking questions from it.  Yes, some neuro's ignore the whole thing - ----and then you need to move along.  But, many people here have come back to report that the timeline made the whole difference and sometimes made the diagnosis in the doc's mind.  Mine clearly knew the diagnosis after he read my write up.  For hints, read the thread (probably on the 2nd or 3rd page - "Timeline 101")

Make sure the timeline tells briefly who you were before all this started and what you are losing - and how frightening this loss is.

Be honest about your symptoms, but do not exaggerate them or especially do not exaggerate the problems on the physical exam.  The neurologists can easily tell when someone is faking or exaaggerating muscle weakness, balance problems, etc.  They have tricks!

If the doctor is vague, press for more clarity.  Explain you do better going through the testing if you have a feel for what they are thinking rather than worrying about things that may be far worse.

I totally agree about bringing a helper, observer along.  It should be someone that makes good eye contact and can back up what they may have observed about you.  They can and should take notes.  They should prompt you with the questions you need to ask (and have told them).  The other psychological reason for having another person along, is that even jerks with arrogance toxicity know when they are being jerks.  A 2nd person/witness will sometimes keep them reined in a bit.

Finally, if the doctor brushes you off, you will likely know it.  You feel the door shutting in your face.  Sometimes you may meet a doctor who really is attentive and spends a good amount of time with you, but in the end, dismisses your problems with things like, "Well, fatigue is a funny thing."  The final decision on whether to continue with a doctor will be made on whether you feel totally dismissed or you can see that the doc is making an attempt to get at the problem.  By what testing or follow-up is planned.

I have learned that my neuro needs to give his "schpiels" (sp?) in teaching a topic "uninterrupted!"  I am bad about interrrupting, and I am learning to listen, even though I know what he is saying, and want the next level of explanation.  

Amy - You began a really imprtant topic here.  Thank you!  Quix

[Quixotic1]

Another thought.  Plan to be at your worst for the visit.  This is not devious.  Ideally they would see you at the end of your day when you can't even drag yourself out of your recliner.  If the appointment is in the morning, get up very early and do some vacuuming or something.  If there are meds that make you feel much better and you DON'T have to take them regularly, hold off.  Overdo the day before.  Take a warm shower before the visit.  I'm not saying to "play Camille" but, attempt to let the doctor see the you that isn't functional.

My wonderful vertigo doctor always told me that his office staff thought I tried to be too chipper and too "up" when I was there and they all suspected that I was worse than I looked.  But, I don't think you can depend on people being that perceptive.  My PCP is the one who said, "Well, you don't LOOK very disabled."

Just a thought.

Quix

[mokibear]

Amy, I appreciate you writing that out for us. I have an upcoming appointment and it does remind of things I need to do. Although I have been through this before, and learned the hard way, everything you say is true.

Quix, I was wondering about doing just what you suggested. A lot of the times I go to any specialist, it is in the morning and I am in fairly good form still. I have been told that since I wasn't shaking when I was there it can't be that bad.

So it would not be out of line to bring it on? A hot bath will make my symptoms last longer than a shower and I will definetly pay for it, but I was already thinking of doing it just for the reasons you stated. Pretty sad though when you think about it that we have to purposely bring our symptoms on just to be believed.

Hugs
Moki

[Jazzyfizzle]

Awesome advice


Jazzy

[Quixotic1]

Truly the doctors "want  to see the problem."  It's not like you are fabricating anything.  You are arranging for the docs to see what you are suffering from.  Again, this is NOT a devious thing to do.  Just don't exaggerate it in the exam.  They can tell.

Another thing that I have suggested to people who have "visible" problems like nystagmus or spasms that twist them into pretzels or myoclonic jerks or whatever - Have someone video the problem when it is at its worst.  Often this is at night.  The video will tell a more accurate and vivid (and, unfortunately, believable) story that we can verbally express.

Quix

[mokibear]

Thanks for that. I wondered if it would make them think that you were faking, if you came in with your symptoms. As a rule, I can't bring them on demand, only with a hot bath or really over doing things but then it isn't always the visible symptoms. The hot bath will trigger my excessive shaking though and I don't even need to try to exaggerate it as it does quite well on its own.lol But I guess wearing the tassles would be too much eh. haha

Thanks again Quix, you are a gem
Moki

[RIDDICK_777]

Nice one Quix i was wondering that myself actually what you said, i will be pushing myself and going active as much as poss before i see the next one as i know this totally blasts me and i want then to see me when im not in a good way, i will also stop the meds too as they could be holding things back to an extent, frustrating aint it one minute you are totally well knackered and think youre gonna pop your clogs, the next things are still there but eased off it really frustrates me this malarky

David.

[RIDDICK_777]

NICE POST AMYLOO LOVE AND BEST WISHES DAVID.

[Quixotic1]

Okay, but do not stop any meds you take on a daily basis!!  This can be dangerous for many meds.  If there are ones that you take "as needed" to calm the symptoms, those would be the ones to let wear off.  Make sure you understand this!!  Q

and...ixnay on the asselstay!

[SOONERMOM]

Thanks for the "heads up" info.  I was also told that my 2nd mri (that  was done in late Nov)looked good.  I went yesterday and requested a copy of the report and the films.  I had started having tingling down my back and into my arm (had only been on face) all on the left side.  

They were accurate about my not having lesions on the spine, but they failed to tell me all the other "issues" that I had going on that include: marked abnormal marrow changes, borderline spinal canal stenosis, severe foraminal narrowing, and nerve root impingement or compression ---to name a few!  I am 39!

I guess I figure that I paid @ $1500 for this test, the LEAST they could do is give me the results and discuss them with me??  Even if they don't have anything to do w/ MS!

The wording that this radiologist used was much more "disturbing" when he referred to my brain lesions than the last one was.  I was just told in Oct. that they were probably from migraines.  This report said, "inflammatory demyelination such as multiple sclerosis is most likely,...pattern and appearance of the lesions on the sagittal FLAIR images are certainly suggestive of MS type lesions....wml most suspicious for inflammatory demyelination.

Do you EVER get used to reading that stuff about yourself??  

I guess that  could be why he told me at my last appointment that he was  concerned that I have (will have) MS??

Luckily, I already have an appointment w/a MS specialist in 2 weeks and maybe he can explain if I should be concerned w/the results of the c-spine mri and if I should go to yet another doctor(orthopedic)??

I am going to print off this list and read it before each appointment!

Thanks again!!

Stacey

[Amyloo]

Are you saying your radiologist is seeing a problem in your brain but the doctor is brushing it off?  If so this sounds very familiar...........I am glad you have an appt. with an MS specialist.  If at all possible see if you can get an MRI of T spine; they just found two lesions on mine.  (I hope you are not footing the bill for these.)  God bless you Stacey, glad you are on the board!!! Amy  

[SOONERMOM]

Let me try to clear up my confusing post!  lol

My neurologist told me after my 1st mri that he thought the wml's were from migraines.  I continued to have more and more problems, so he ordered the second and included a c-spine.  When the nurse called w/the results, she said the brain was unchanged  (same # of wml's) and the spine looked good(because there were no lesions).

I guess I just thought they could've told me about the nerve compression, etc. that could be causing the tingling in my back and arm??  I was just left to think that there was NOTHING wrong w/my spine that could be causing my problems.

sorry about the confusion!

Stacey

[Quixotic1]

I think an essay on "How to Prepare for the Neurologist" is definitely one we want available for people to be able to read.  You have written 90% of it here and done it well.  Would you be willing to write it up, edit it to be succinct and spell-checked and incorporate some of the additional suggestions?  Then if you could email it to me as a ".txt " file I could submit it.

You mentioned that it "piggy-backed" onto my post.  Which one?  We might want to include or adapt that one, too.

Is that something you would like to do?  If not, do I have your permission to submit what you have written?

To everyone else: Have you written something that has prompted a lot of discussion and you feel we might include?  Speak up over on my "Need input.." thread.

Thanks, Quix

[Amyloo]

I would be happy to.  The piggy back post was your "musings" one; I guess piggy back might not have been the right phrase. This subject came to mind after I read your post.  Amy

[Quixotic1]

This deserves a trip to the top!

[Quixotic1]

bump

[Amyloo]

Quix has asked me to retype this for the main page and I promise I will.  Here's the original post for newbies, especially the one that just got blown off by her neuro.  Amy

[monotreme]

bump as requested by Quix
Elaine

[Quixotic1]

Hi, I would love to include this post with the additional suggestions in the Health pages.  If you would like, I'll tighten it up and submit it with your name.  Whichever way you'd like...Quix

[Amyloo]

You are quite gracious.  I know I said I would do it, I just don't see it in my near future.  I'm sorry.  Please submit for me.  Thank you my friend, Amy

[Fluffysmom]

Thank you, thank you, thank you!

I found this thread earlier today when I was looking for something else I had read, and found Amyloo's post so helpful that I printed it out, then added Heather's # 7 and Quix's addendum.  I am seeing a new neurologist soon, and since the last one was a big bomb, I can use all these suggestions.  I was filling out my paperwork (have you ever had depression/anxiety? Mental illness? Head injury? Use street drugs, alcohol, smoke?  Argggh! Excuse me ) when I took a break to go online and visit you all.

I think this is really helpful and I'm glad you will work it in to the health pages, because after my one neuro and reading all the bad stories, I know it is needed!

I'll work on my timeline while on vacation.

My best friend knows a young lady (18) with some pretty severe issues who is going to a neurologist soon, and was worried about him/her writing her off because a previous doctor mentioning the somatic thing.  If no one minds, I will give her a copy of this great info.

Thank you all so much!

[Quixotic1]

falmorgibble

Be sure to read through all the posts.  More suggestions were added later.

Q

[saveone]

bump

[sllowe]

Wow, this was deep in the archives.

All, Amyloo's original post was made into a health page.  Should be called Dr. Prep and then credited to this thread and Amyloo.  If we get more adds, we can add onto the HP.

Ame this was such a great post, hard to believe it's been almost a yr since you created it. Still so very much on the money!

-Shell

[Fluffysmom]

This post has helped me so much; I was able to get more testing done and a few more answers with this information, and knew when to move on to the next neuro after a moderate amount of venting (here).

Now I'm seeing a MS specialist, and this information is helping me to hang on and get referrals to specialists that can help figure out my puzzle.  My specialist doesn't seem to be into solving my puzzle (health-wise), but does listen to my questions and has agreed to send me for 3T MRIs in the spring.

My neuro-ophthalmologist told me that he was my "neuro #4", and he really seems interested in helping figure out what's up with me. I had to be proactive to get in to see him; my MS specialist said she'd refer me to neuro-ophthalmology, but when I called for an appt., I had been referred to general ophthalmology.  I called neuro-ophthalmology, explained the "mistake", and was scheduled for my 4 hour appt. in no time at all.

I'll have to check out the Health Pages (it's been a while since i have) and see what this got condensed into.

Hugs to all the wonderful people who contributed to this great, informative, and inciteful post.

Kathy

[BOK2Bjan]

I have had a very different and I think weird experience with my dx.  I have Systemic Sclerosis, so my neurological symptoms kept being blamed on my other disease.   I even had brain MRIs that showed white matter lesions, but still I was told - it may be nothing - we'll watch them.  The 2nd one showed more lesions and the 3rd one even more, so I had a LP.  The CSF was positive for both protein and the "oli bands".   I saw a neuro who said I had MS and I never saw it coming.  She didn't want to know my symptoms - although I'd been telling my regular dr about symptoms for quite a while - they just weren't attributed to anything other than my SSc.  I kept saying I needed to see a neuro, but I guess he wasn't listening to me as well as I thought.  The problem now is, because I have so many other diseases, I am only going to see the neuro every 6 months.  I'm starting on Copaxone and I don't even get to talk to a dr about my symptoms or even the disease itself.  This diagnosis came as a shock out of left field!  The comments about the neuro though - I could totally relate it to dealing with Rheumatologists!  I think most specialists can be difficult to work with.  I had a rheumy talk to his tape recorder instead of me one time.  It was a very distressing and disrespectful visit.

[ambrosiawind]

question about overdoing it before exam

I take nortriptyline i dont think that i can miss a dose it's 20mg but i do want to be in a flare or psuedo flare for my appointment what should i do my appointment is in the am
can i take my med even earlier than i normally do

how do i make my timeline brief

thanks

[Amyloo]

Wow, I had forgotten about this.  It has been a year.  Wow.  I am so glad this thread continues to grow with suggestions and is still helping people.  Love, Amy

[Salamander2]

I wish I had found this months ago.  Wonderful post.
Sally

[Quixotic1]

I posted an example of an abbreviated timeline in a new thread.  I hope it helps, but I will try to explain it a little soon.

Q

[Octarine]

bump

I think "bump" means we're posting simply to work the MedHelp system and get this thread featured as one of the most popular and current?

It's an interesting exercise in anthropology to join this fine group, try to figure out the netiquette, and hope that I'm not offending or driving anyone crazy with my faux pas.  You've already become a very important sounding board for me; my husband and friends are being accommodating but I can tell they don't quite believe me and/or are sick of the topic.

[Lulu54]

Octarine,
"bump" is just our shorthand to let everyone know we feel this topic is significant enough to be moved to the top of page one.  

If you look at the ordering of threads, the one with the most current post is at the top of the list, with the exception of the posts that have those blue thumbtacks.  The thumbtacks keep them stuck in their position at the very top of the page.

By writing "bump" it does make it the most current.

Good figuring,
Lulu

[Quixotic1]

bump

[Fluffysmom]

Thanks for the bump!