In what area is your Neuro lacking?

With so many of us complaining about our Neurologists, I thought this might be a good post to voice some of those concerns.(and maybe relieve some stress in the meantime)  This thread isn't really about symptoms, it is specifically about how you feel you are being treated by your Neurologist.

Are there certain areas that you feel your Neuro is lacking?  Do you feel that he/she is not listening to you and your concerns?  Do you feel that you are getting a thorough Neurological work-up, when you show up for an appointment? (especially your FIRST visit)

How many minutes on average are you seen for a  follow-up Neurological appointment?  Is your Neurologist making sure that your pain issues are being addressed?  Are they exploring all avenues of testing to find out what is causing your problems?

What can your Neuro do to make the appointment more pleasant for you?  What expectations does he/she fail to meet?  Overall, how could Neurologists in general make your visit a more meaningful one, where you don't come out of the appointment with more questions than you have answers?  Are we as patients,  doing everything possible to list our symptoms with clarity for them?  With MS being a very difficult disease to diagnosis, since it mimics so many other disorder's, how (in your opinion) can Neurologists help to speed up the journey through "Limboland?"

I am going to give this to my Neurologist.  She is going to take it to the head of the Neurology department at the teaching hospital where I live.  It will be shared with The Chief of Staff and upcoming interns, that are going to specialize in Neurology.  Your comments could very well change an interns attitude towards his potential patients in the future.  

Maybe you will even want to share this with your Neurologist.  There is no telling how far these comments may really go, if all of us raise our hands and voices to be heard by the Neurology community as a whole..  It may be our chance to finally be heard.  It all starts with one voice....

Again please keep your answers on subject  This is about the Neurologist and his/her care of patients.  It's about hopefully, changing some Neurologist's views of what the patient feels is vital to their care.  He/She may also have expectations of their patients.  Are you presenting your symptoms in a clear way for the Neuro to evaluate?  (The "timetable" we always talk about here on the Forum. Clear and concise.)

I would really appreciate your thoughts and suggestions.

Best Wishes,
Heather

[Charley123]

Hi Heather.  What a good idea.
I wrote up a letter to my neuro, (never sent) a couple of years ago.  I've cleaned it up, (left out the ranting-I was so mad!) but here's the gist of it.
To a neurologist:
1. Treat your patient with compassion.
2. Never demean your patient by talking over their head in medical terminology.  Remember they coming to you for help and need you to speak so that they can understand you.  They wouldn't be with you if they felt well and those of us who have all these confusing symptoms really feel lost and sick and don't want to be confused any more than we already are.
3. If you do not know what is wrong, admit it.  Don't ever assume that just because you don't know what's wrong, someone has Conversion Disorder.  That's an I-don't-know-what-is-wrong-with-you cop out.
4.  Never tell your patient they are too old to have MS or that it is not genetic.  Your patient will write you off because they will know your MS experience is limited.  Stay up to date, please.
5.  Pay attention to the MRI's and all the tests. Make sure they were done correctly.  It shouldn't be the patient's job to monitor all of the information.  Unfortunately, it has become just that.  
6. Listen to your patient.  Spend a little time in their skin.  
I think you are doing a really great thing and hope it does go to the teaching hospital! Charley

[sllowe]

Heather - I'm thrilled you are doing this!

I wanted to post this comment to you while I gather my thoughts!  Wow, this is exciting! - Shelly

[Rena705]

I don't think that there is enough space in Medhelp for me to talk about my experience's with my neurologists is there...maybe it's best I leave well enough alone don't you think?

Rena

[monotreme]

With the exception of the neuro in Univ of maryland MS center, the neuros he has seen have been cold, callous, cruel and dismissive.

They lacked respect for the individual, they lacked compassion, and in general regard their practice as a business and the patient is just another object on their daily assembly line through the office.  

They have lacked the ability to truly look at the patient and the symptoms being presented to them, and hide behind diagnostic criteria instead of using their own brains and clinical expertise.

So I guess you could say that I think the neuros Craig has seen with the exception noted above, have forgotten the oath they took when graduating medical school.

Elaine

[Rena705]

Sorry, I didn't read the gist of what you are trying to do here.  My first Neurologist in 1993 was awesome...unfortunately she left and went back to England to practice.

My second Neurologist was a nightmare.  Granted, he did the appropriate testing but the man has a terrible attitude toward his patients.  The first time that I saw this neuro he did an exam and read my MRI.  He stated that while the lesions in the white matter are very tiny and although they are in the perventricular area as well as in the grey matter of the cerebellum, they are not hightly characteristic of MS placques.  He said that he suspected that more likely they are vascular abnormalities.  Two months later I had a lumbar puncture and this same neuro stated  "both the albumin and absolute levels if IgG were markedly increased.  In addition she had an increased IgG index and daily sed rate of IgG synthesis at 45mg/day.  These features are highly characteristic of MS and seem to SUPPORT THE MRI OBSERVATIONS!"  He had previously stated that the MRI contained placques that are NOT characteristic of MS!  This man treated myself and my family as though we were a lower class of human beings.  He was rude, dismissive, angry and acted as though we were children in primary school that he felt obviously couldn't understand a word he said.  It was very frustrating dealing with him and I soon searched out a new neuro.

My third neuro was like a finding shelter in a storm.  She was wonderful!  She seemed to care about what was happening with me and was always willing to explain things to myself and my family.  I was under her care for approximately 13 years!  Then I got sick again.  I went to see her with a severe pain in my head and a drooping eye.  She said that it was probably my MS and that I was having a relapse and she put me on IV Solumedrol and weaning Prednisone.  I was fine after that until 4 months later when I had another attack or relapse (as she called it).  I was told that this neuro could not see me for 3 days...I was in extreme pain and scared to death so I went to see a dr at my gp's clinic who promptly referred me back to NEURO #2!  I didn't want to see this rude man again but what choice did I have?  I was in severe pain and I couldn't function and I certainly couldn't wait 3 days to see Neuro #3!

So, I went back to see neuro #2...what a HUGE mistake!  He diagnosed my with Raeder's syndrome and told me that he would treat me for this disorder "as long as I didn't see anyone else regarding this problem."  Now I found that rather strange but hey, this neuro is going to help me NOW...I need help NOW...of course I AGREED!!!  So neuro #2 put me on IV Solumedrol and weaning prednisone and then in the next 10 months I discovered what hell really was.  The pain in my right temple would not dissipate and my eye continued to droop.  A CT Scan was done...showing nothing.  An MRI was requested by me but was turned down by the neuro.  Neuro #2 had a resident in during one of my visits and I had at that time a Lumbar Strain in my lower back.  The neuro did an exam and insisted that I have an MRI of my Spine and Pelvis to rule out a tumor.  I had explained to him that the pain in my back was due to a lumbar strain but he wouldn't listen...it was as though he wanted to show off for this resident.  There was a waiting period of about 5 months for this MRI and he suggested that it might be better if I paid for the MRI myself and that way I could get in sooner.  I had been told by this neurologist that there was a possibility of a tumor on my spine...so what could I do?  I spent the money on the MRI and had it a few weeks later and it came back normal!  I was given a multitude of meds to try for this "Raeder's Syndrome" but nothing was working.  About six months after first seeing neuro #2, I had a bout of vertical double vision that lasted for 10 full days!  I went to ER (because the neuro said he couldn't see me in his office for about 11 days), where they did a CT Scan and a level check on my anti-seizure meds (high-normal).  Neuro #2 found out I went to ER and I was told to go see my gp and see if she can give you something to get your emotions under control...he felt I was being a hysterical woman because I went to ER because I couldn't see properly!  10 days later I was in neuro #2's office and he was looking in my file...I asked him what he was looking for...he said "your MRI report from the spring", I responded that I have not had an MRI since 1993 when he diagnosed me with MS!  He asked, "did I diagnose you with MS?" and I responded that yes you diagnosed me and although I have asked you to do an MRI for almost a whole year you have never done one!  An MRI was promptly ordered (within 3 days) and when the results came back he had his nurse call me.  The nurse said that my MRI came back positive for MS and that neuro #2 is advising that I get a second opinion because he doesn't think he can help me anymore!  Dropped like a hot potato!

So I go to my gp and ask if she can refer me back to neuro #3.  She informs me that Neuro #3 is not likely to see me again because of the way "YOU" dropped her 10 months ago!  I said that I didn't drop her...she couldn't see me for 3 days and that is why I went back to Neuro #2 and if she thinks I wanted to go back to Neuro #2 she must be crazy!  I appealed to my gp and apparently she wrote an "apology" letter to Neuro #3 "pleading" with her to see me.  She got an appointment date and I figured I was set.
Boy was I wrong!

[Rena705]

I went to see Neuro #3 and she did a short neuro exam and told me that my MS is "in-active" and because of this she doesn't see any need to be on the disease modifying drugs.  I am stunned because I have been having soooo many problems for the last 6 months and the last neuro has constantly said that "it's an underlying symptom of your MS!"  She then said that "most of your problems are due to Neuro #2 over-medicating you and you will be fine once your gp gets the meds under control."  She then told me that she will not be dealing with me directly and that if I have any problems I will have to deal through my gp!  What is the point in having a Neurologist then?

I told my gp what the neuro had said and she responded "I don't know that I can be of much help to you because I really don't know anything about MS!"  How terrifying is this when you have been told that your MS doc won't see you and your gp knows nothing of the disease you have been diagnosed with???  TERRIFYING!!!

So now it has been 7 months since I saw a Neurologist.  I am still having problems with my balance, nerve pain in my feet, deteriorating eyesight, severe heat sensitivity, extreme fatigue and I really have no one to help me.  I went to my Opthamologist with the problems I am having with my eyesight and he says that my problems are neurological and that it is not a problem with my eyes.  My prescription has not changed a bit in three years.  He is going to write a letter stating same and send a copy to my neuro, my gp and myself for my records but I don't really hold out much hope that this is going to change anything.  I have been treated very badly by my neuro I believe because I stopped seeing her but like I said before, neuro #2 said he would treat me if I agreed that I wouldn't see anyone else for my problem!  What the heck else was I supposed to do?  I grew up believing that our doctors are to be trusted and that they are our doctors because they genuinely care and want to look out for our well being...what a crock!  I have been manipulated, lied to, abused, over-medicated, under treated and I have no where to turn...even my gp doesn't know anything about MS so she is only going by what my Neuro #3 has said in her letter to her..."the patient's MS is in-active and therefore requires no treatment." and therefore I am left to my own means. I have been seen by a Rheumatologist and was diagnosed with slightly low Vitamin D and Osteoporosis in my hands.  I have even appealed to the MS Society and have gotten nowhere.  I was told that if I were given the name of a new neuro and if I were to somehow GET an appointment, that it would be a conflict of interest between the two neuro's and I would probably find myself blackballed by the Neurological Community!  Seems to me that I already have been "blackballed" and I don't hold out a lot of hope for any assistance in the future.  If neurologists have a bad name...they have made it for themselves!

[jensequitur]

I would say to any neurologist:

• Be as up to date as possible on current research when dealing with multiple sclerosis patients.  The last ten years have really been interesting, with recent advances in MRI and optical coherence tomography.  

• Be aware of common problems with MS patients, including cognitive problems, fatigue, muscle weakness, and pain.  There's lots of symptoms, because the brain is a complicated place - but when you get down to brass tacks, the neurologist should focus on the symptoms that cause the most difficulty with daily life.

• Make sure your patient knows when to contact the neurologist, and how.   Day-to-day sensory symptoms are certainly not cause for alarm, but if there's a real symptom that can cause a health issue, there should be a quick way of getting in touch with the neurologist or their office and telling them about it.

• There is no such thing as benign MS, and no real way of predicting the progress of MS.  Any MS patient should receive a yearly checkup and evaluation of current symptoms, whether the disease is quiescent or active.  Pay special attention to brain atrophy and cognitive symptoms, especially when the patient seems to have a relatively quiet course.

[WarKitten2008]

I had to comment on this, maybe this will help someone one day.

I was Dx's back in Feb with RRMS
and not getting any better.

I have had a horrible time with blanentley incompetent office staff.
I liked my nero even tho he was not an MS specialist he seemed to follow
most all the guidelines  mentioned threw out this site during my diagnosis
period.

It would take to long to explain the mess they always made (the staff) with
perscriptions, refferals, insurance, DMD's, loosing test results, and making
my follow up appointments useless.

I had in the beginning made a long polite complain to the office manager there
and low and behold things got even worse after that, she was actually part
of the problem as I was to find out later.

My nero didnt leave any form of open communication for his patients, such as
email contact.   I had to call incompetent staff to get a message to him, which
ofcourse would never reach him.

I couldnt even get the betaseron going, after three weeks of waitting  I got fed up
and dropped them.
I have been going down hill and in pain ect, and I started to loose confidence in
my doctor and his treatment plan for me.

So you see in all actuality I did like the doc, But I lost confidence in him due to
the fact that I could never get my treatments moving with out a huge 3 week hassels
for even the smallest thing for them to do, just even calling in a script to my
pharmacy was a week and a half process for them.  uuurrggggg.  SICK PUPPIES

So you see,  A nero, or any doctor for that matter can in the end, only be
as good as his staff.
Beware your staff, they can hurt your reputation.          Good Luck

                                                                WarKitten
Oh Ps.   I have found an MS Specialist and am awaitting my first Appt.
meantime my Pcp office is taking good care of me.        

[Sunnytoday]

My neurologist refused to read my time-line and told me that I must list my symptoms aloud. I have difficulty with memory, so this becomes very hard. He only spent about 15 minutes total on the first visit. I failed the (Rhomberg?) test, both the one where you stand with your feet together and the one you walk in a straight line. I also couldn’t hold out my hands without them dropping. After these occurred, the neuro seemed interested in getting further testing to solve the problem. After I become more knowledgeable I realized that I was only given a partial initial neurological exam.

However after he saw the radiologist report of a clear MRI, he did not seek any further tests to rule out mimics or to rule in any other diagnosis and when I was hospitalized he refused to examine me and only requested that I be discharged immediately, in spite of the fact that at that point I could not walk and when I entered the hospital I was walking.

When I returned to his office the next week for a follow-up visit he informed me that “it may be spinal issue” and “we can’t run a spinal tap because you are a poster child for complications” and “you could be faking this, but it would be difficult” and “you have hidden depression”. In the end, we saw him for 15 minutes and our questions were not answered because he was too busy lecturing on depression and the effects of the medicine instead of listening to my new symptoms and answering our questions and when we walked out of the office all we had was more questions and a bag full of samples of anti-depressants.

So, here I am, I am looking forward to my 21st birthday this fall and sometimes I wonder, as this past year has brought so much changes. I have difficulty talking clearly, standing without falling, remembering things, holding my head straight without it tilting to the side, jerking muscles in my legs, drooping eye-lid, paresthesia, difficulty with perception (is that water, or soft cloth?) dropping items, difficult speaking or singing due to my jaw muscles jerking, pain in legs when things brush them, shaky hands, and I cannot lift the front of my foot to walk properly and have to deal daily with spasticity in my legs.  

And yet, all I have been given is a bag of anti-depressants and according to my neuro “if we are lucky, this may work and we may see a slight improvement”.

~Sunnytoday~
* Note, I reacted to the AD after only taking if for two days and it was promptly stopped and I have not been on one at all since then by choice.

[Sunnytoday]

To any doctor or doctor-to-be who may listen and benefit…

First, your job is to do no harm. Secondly, your job is to heal the human body using modern medicine and technology. Please remember this as I, the patient, am placing my health in your hands. If you cannot figure out what is happening inside my body, please, tell me so… as you keep looking for answers.

I am not asking for miracles from you- I am asking only for the “why”. And please, when I come in with a time-line of symptoms and copies of results of tests: take the time to read them. I will know if you did not and it will bother me, perhaps as much as it would bother you if I, the patient, was unprepared and wanted you to simply diagnose me without any history or exam.

Please, do not be upset or brush me off as I ask you questions or request testing. I highly respect your degree, but remember, I live inside this body and am feeling the deterioration and I am looking for answers also. Do not stop testing, looking, and asking questions and simply say, “it is of unknown origin”, or tell me “it would be very difficult to fake this, but you could be doing that”. Your job is to trust me…. as I am employing you, my physician, to help me live the life that was designed for me and to find answers to the health problems I am facing.

Please realize the weight your words carry. I was taught to respect you, and when you decide that you are tired of dealing with me, and start simply grabbing for answers and say things such as “I think you have hidden depression, let’s try this medicine” this can be very damaging. If I did not complain of depression and do not have the outward signs of depression, please do not say that I am depressed. I know that this is just one of your ways of saying “I give up”. I’d much rather hear that from you than be handed another bagful of samples. And, if after seeing me several times and you still feel as though I am dealing with depression, I will listen. I may choose to agree or disagree, as I have many health problems; some have mentioned that they get depressed when faced with a mountain like this and others have managed to maintain their positive and depression is not even in their vocabulary.

So, I am here today to see you and I have heard that you are near the top of your profession. I am hoping that you truly see me as a human being who is in need of your compassion and that you direct all of your brainpower toward listening and thinking about my case for at least the length of this appointment. I understand that you’ve been taught the exact number of minutes that you can spend with your patients and make a profit. But please, sometimes it’s not about dollars and cents but about life and living. So, I’m asking you, I need your help. Will you be there for me? Or will I simply see a body, in a white medical coat, who’s mind is far away; unable or unwilling to give me the health care that I so desperately need.

[Wobbly]

I have dealt with three different Neurologist and I thought they were basically all the same, rude and NO PEOPLE SKILLS.

I felt like I was wasting their time, I was told what I'm I there for?  Well, obviously I was referred to them.  

I have seen other specialist eg: Rheumologist whom I found to have People Skills..and were concerned of how people were feeling.  

seeing a Neurologist is worst then going to the dentist, which I am terrified about.

I understand they had alot of education, alot of people do, but they are still human like everyone else is.

thats it..
andie

[Tahiri_Veila]

To a neurologist:

1-Expect to spend more than 5 minutes with a patient.

2-Read through their chart, labs, timeline(if they have one) before you come in or if not while you are in the room.

3-Look at the MRI's yourself.  Radiologists sometimes miss things.

4-Ask the patient questions and listen to what they are saying.  Make sure that you get all of the information you need.

5-Perform a thorough neurological exam.  Don't skip corners because you think there is nothing wrong or none of the tests so far are negative.

6-Be willing to share your thoughts with your patient in a way that they can understand.  Tell them what you think it is.  Tell them what you would have them do or what tests they should have done.  Give them advice and make them a part of their health care.  Do not make your patient have to ask you in order to get tests done.  Do not make you patient have to ask you what you think is wrong.  And do not be afraid to say I don't Know.

7-When giving a medication, make sure that you are telling the patient the correct way to take it, the side effects and .  Keep up on the newest medications available.  And if a patient is in pain help them to be able to manage it with something if needed.  Don't just refuse to treat the pain because you don't believe in pain medication yourself.  (yes I actually had a neuro tell me this).

8-Make sure that if you suspect possible MS that you tell the patient and do regular follow ups and MRI's.  If you choose to specialize, don't just completely ignore a new patient and thell them they don't have anything or its just stress because you know that they do not have whatever it is you specialize in.

9-NEVER tell a patient "Oh its just stress." or "It will go away its nothing." or "Its all in your mind".  

This is a really long list, but I felt it worth sharing because I have gotten better care and followup and actually closer to a diagnosis because of a GP not a neuro who would not even do any tests.
Tahiri

[Sarahsmom46]

You are coming up with great topics - Thanks!

The one thing I think neurologists, mine included, may be lacking is in how to handle patients who come in with "possible" MS.  If they know that their skills and actual experience is lacking with MS patients, then they may either tell you so you are aware of it or ask if you would like a referral to someone they know who has more experience with this.  Neurologist no doubt have learned about MS, but actually working with patients with MS or patients in the process of being diagnosed with MS takes something extra especially patience and good listening skills.  We all present so differently and tests just don't always tell the whole story.  

Julie (Sarahsmom46)

[biowham]

I had a neuro who drylabbed my report; I ordered my patient records and found this out.

***Don't drylab patient reports/office notes.***

First neuro also declined to review personally my MRI results. I think that having a grasp of all of the data is necessary for a complete approach to caring for a person. Of course, this is the same person who drylabbed my report, so data accuracy was obviously not a high priority. As a scientist, I know that fresh eyes on data can be incredibly important.

***Become familiar with all data related to the patient--imaging results, blood test results, patient-produced timelines. Don't dismiss or accept *any* of it without first reviewing it for yourself.***

I had a second neuro who decided that my upper body had a conversion disorder but that my lower symptoms were attributable to a t-spine herniation. He was fixated on the t-spine and really didn't want to include any sx above that level as "real." After I faxed him some objective results from an EMG/NCT workup of my upper extremities, he decided I didn't have conversion disorder (I'm not a "good" candidate for one, anyway). I moved onto another neuro.

***Don't conceive a hypothesis and then try to make the signs and symptoms fit it. Take all the data and deal with it, even if that means saying, for the time, "I don't know." ***

I tend to agree with the poster above who said that neuros appear inclined to say "conversion disorder" when they lack a good explanation for symptoms. The thing is, if they really truly believe that, they ought to refer the patient for psychiatric evaluation because real conversion disorder is serious and requires attention. I have almost never heard of that happening.

***If you say, "Conversion disorder," also offer a referral for a psychiatric evaluation. If you really believe it, act accordingly.***

My third neuro performed a complete exam, *listened* closely to me (I know this because of his office notes), and had the guts to say, "I don't know." He also did something that it appears many neuros are unwilling to do--he said that it might take time to figure out what is going on with me. That helped me disengage from the expectation that I had--and that many patients have--that I'd have an answer right away after all test results were in.

***Don't keep it a secret that discovering what the real diagnosis is may take some time.***

Last, and doctors probably get sick of hearing this, but patients are living, breathing people, not "subjects" or "cases." You are not working "on" them, you're not better than they are or superior to them because you went to school for a long time. They are worthy, even if they are not the Minor Diety (a.k.a., MD) that you are. You are working *with* them, person to person. You are a source of aid and information to them, not a superior dictating to an inferior.

***Do remember that your charge is to work *with* the patient--who is a person and your equal--to improve their well being.***

This is a good idea, Heather. Interesting.

Bio

[Heather3418]

Excellent, excellent, excellent.  I go to my Neuro on August the 4th, so if you have some thoughts about your Neurologist, please add them here.  These are really good replies.  Thank you all.  Keep them coming if there is more people that would like to contribute to this.

Remember it only 'takes one voice,' to get the ball rolling...your opinions are important.  They really do count.

Thanks again,
Heather (Earth Mother)

[Terrie2008]

Hi

My first appointment.

The Neurologist calls me through the first thing I did was shake his hand and said nice to meet you, he said nothing and walks in behind us closing the door,he then says and who are you, looking at my husband then tells me to take a seat.

The Neurologist starts of saying what's wrong and I got my note book out to refer to, he said I have not got time to read that we only have half an hour so just tell me.
I have difficulty with memory, so I had to keep asking my husband for help, If he could have said to my husband wait outside he would have done.

I start to tell him but I was rushing to get all what i could remember out he was just writing I saw the top of his head quite a bit through this consultation no eye contact.

He then started on a few physical test the first one he shows me which was putting your arms out straight palms up then palms down I said ooo it hurts when and that's as far as I got when he said "well we don't have to do the tests"  (it was the way he said it).

We continued the rest of the tests then we sat back down, he asked me what I thought was wrong, I said that I really don't know.

He then ask if I worked, when I said I wasn't his attitude seemed to get worse,  I know I was not imagining what he was thinking yeah another disability case (maybe I'm wrong but I don't thing I am).

He said that he couldn't find anything abnormal from the results of his pushing / pulling / prodding, but will arrange for a MRI but "I think it will come back normal I'll see you again in 3 months."

I don't think he looked at me more than 4 times during our visit, I came out of there feeling I had wasted his time.

I know doctors are very busy and have a lot of patients to see but without patients they would not have a job so please each patient you see remember we would not go through all this if we felt nothing was wrong,we don't want to go through this we just want to be well.

[margaretta]

I think I have a very good neuro, in terms of people skills.  Since the purpose of this is to share w/your neuro friend with the aim of improving visits, I thought that it would be helpful to share both what I like about my neuro and what I don't like.  He's very good, so it is mostly a list of good things.

1)  Time.  He had a long office visit for me and he returns my calls (or has the assistant return them if that is appropriate in the situation).

2) Manner.  He listens to what I have to say and tells me that he likes patients that do research on their own.  It is hard to ask a doctor for tests or bring up ideas without seeming rude, so his going out of his way to tell me that he likes this makes it much easier to ask him questions about what I have read.  That doesn't mean he always agrees with my does the test I am asking about, but he either agrees or he gives me a respectful and kind explanation about why he thinks it isn't the case (or the why the test isn't needed).

Right now my concerns are about how we're following up on things.  I have a friend who is a neuro who thinks that he should be being more agressive about testing and this does concern me.  It is very stressful to wait and see, so not doing all the testing that we could reasonably do makes it much more difficult.

(to put this in context - neuro thinks I have ON with uhthoff's.  Have a delay in my VEP.  Symptoms were fairly mild which seems to be holding up the diagnosis. Opthamolagist's exam was normal.  Sending me to a neuro-opthomolagist this time and if they agree it is ON that I think we will start talking about more MS testing.  Haven't done an LP yet or had an MRI of my neck or spine).

[shoshin]

Well, I just went to a new, local neuro today since I've been worrying about what will happen if this gets bad and the one I've been seeing is kind of far away.

One thing I would say is if the patient offers you a timeline or something, take it. This neuro said he didn't need it b/c he thought he had the "general idea" even though we hadn't discussed a lot of things on it. The first neuro I ever saw was the exact opposite--when he saw that I had written notes, he asked for a copy. So I guess be interested in the patient's perspective and if they offer you notes, take them even if you don't intend to read them.

Another thing I find difficult is that if your symptoms are relatively mild, neruos don't always take you very seriously. The one today summed it up by saying that as far as he could tell I just had a few balance issues (i.e. nothing much), but from my point of view this stupid disease is impacting my daily life and I think the fact that I can't walk a lousy half mile to work without wobbling and veering and hoping today isn't the day that my legs decide to stop working (and if it is that day, that it isn't raining) ought to count for something. And it's even more of a crime that all the people on this forum with far worse problems can't get taken seriously and get a dx.

I remember how freaked out I was when I started having inexplicable tingling and numbness out of the blue. I didn't know if I was dying or what. I knew no one with a neurological illness and nothing about them and I had no context whatsoever for this. My PCP at the time helpfully told me that things like Lou Gehrig's disease are rare. So just b/c neuros see all sorts of worse things, I think it would be helpful if they could keep in mind that it's hard for patients to see their own bodies deteriorating as a "mild problem" and try to see things a little more from the patient's perspective. Especially, it's hard for patients when they don't know what's causing the problem. They don't know what's going to happen to them (although I guess an MS dx doesn't exactly solve that problem) and their bodies are betraying them.

I read recently about a place where teachers who are training to teach the blind are sent for a week, blindfolded so no light reaches their eyes, and immersed in the experience of what it's like to be blind. I think there ought to be some sort of similar thing for neuros to experience what it's like to have a neurological problem in some substantial way. There's a video on Youtube at http://www.youtube.com/watch?v=6oraM8IF2Gc where they show these people at a mall being forced to experience MS-like symptoms with things like flipper feet, funny glasses, and thick gloves. Surely, med schools could come up with some sophisticated version of this.

Well, I guess I got a little carried away there, but I think empathy counts for a lot. As well as competence. And being willing to do enough testing. And not just putting patients in a box and never really thinking about the puzzle again (why is it that at the first appt doctors try really hard and then after that they tend to go downhill in their level of effort?)

sho

[Quixotic1]

My neuro is technically quite good and very capable of looking out of the usual box to a certain point.  However, he is personally cold, always seems rushed, but actually does spend all the time needed with me and is incredibly thorough with his interim history and the exam.  But, he completely lacks any empathy.  I have never seen any compassion and, if crossed, he can have explosive temper tantrums in front of patients.

I suspect his ego is very dominant, but it is important to him to practice up-to--date medicine for himself and not for the good of the patient.  

I have decided for the present the knowledge is more important than having my hand held, but I have left there in tears once.  I won't tolerate it it again.  

Quix

[shoshin]

I've been trying to work out why I was so disappointed about the appt yesterday. I think in some ways my expectations are out of whack. Most of the time I leave neuro appts vaguely dissatisfied. I think somehow I want them to *do* something and even tho I know intellectually that (as far as I can tell), they're doing everything that's reasonable or possible, on a gut level I still want some sort of magic wand.

I guess maybe it might be useful for neuros to understand why their patients are so frustrated sometimes.

sho

[happyname]

I can honestly say that my Neuro is wonderful and his nurses ...he has 2 just for him always return calls within an hour, order and auth my MRI right then and even calls me himself if things are really bad.  That says a lot in Dallas.  Oh, and he runs on time!

My only suggestion is with regard to computer charting.  He sits down and reviews my entire file immediately upon walking in the room so I sit there for about 10 minutes in this uncomfortable silence.  He does a detailed exam and treatment plan then comes another uncomfortable silence while he types the whole dictation himself.  I know it sounds silly but I would prefer to be in the room alone where I could read while he reviews my file at his desk.  I find it makes me nervous and then I have to get out my list to make sure I don't forget all of my questions.  I know I won't have a warm fuzzy feeling from him, which I am okay with because I get it from his nurses.  So, I guess my second suggestion would be to hire nurses who are compassionate about what they do.

[Momzilla]

What a superb idea!  I applaud your doc if she takes this further!  Thanks, Heather!

In his defense, my current neuro has never seen me at my worst.  When I had my last acute episode of severe weakness in my legs and the left side of my body, I somehow drove myself to his office, which was on the way to the hospital, thinking he would finally be able to see what I'd been telling him all along.  He refused to see me because his schedule was full and he was leaving on a trip the next day.

I tried to make it back out to my car, to call my son to take me to the hospital, but my weakness was getting worse by the minute.  I kept falling in the hallway, and another patient came out and insisted someone get a wheelchair for me.  In the hospital, I was seen by my neuro's partners, because he was out of town.  I was put immediately on Solu-Medrol in the ER after they examined me and heard this was not my first attack.  My reflexes were very hyper and I had clonus in one ankle.  This was documented by the ER doc.  Upon discharge, the hospital docs said they felt that even though my tests were normal, I had a degenerative, relapsing disease like MS.  My neuro gave me the diagnosis of complex migraines.

I guess the bottom line problem that I am encountering with him is that he's not putting the whole picture together.  I DO have migraines.  I do have vertigo.  I do have tremors. This does NOT mean, even though my tests are normal at this point, that I do NOT have MS.  Because he can't put the pieces together and make them fit perfectly, he is cramming my symptoms into a diagnosis that just doesn't fit.  He is so bound by these criteria that keep him from seeing the big picture, from seeing ME.  

He is also in such a rush each time I see him that I am sure he forgets who I am between visits.  I work for a busy doctor, and I know that he has seen thousand of patients.  I don't expect him to remember everything, but I do expect him to take a look at my chart and see that I have hyperreflexia and clonus, and that another doctor has observed the Babinski sign in me.  Complex migraines CAN'T be the whole picture.   At my first visit with this migraine and MS specialist, I told him that my first neuro thought I had complex migraines.  After examining me, he said, "Complex migraines is NOT the whole picture here."

It is easier for him to give me medicine for complex migraines and send me away.  And that's what I'm doing.  I'm taking medication for complex migraines, and I'm going away.  I've had it with doctors for now.  I am tired of trying to fight for someone to step up to the plate for me.  I'm being a compliant little patient until my next episode.  Which I know will come.  My symptoms continue and I manage.

Zilla*

[Deb61]

How awesome and exciting that your doctor is doing this!  I've had some bad experiences with neuros in the past, my current neuro is pretty good.  

My first experience with my neuro was for migraine headaches.  He only specialized in migraines, so I cannot fault him when I told him about my other neurological problems in getting the big picture.

However, my second experience with a neuro, last May (2007), was not good.  I came prepared, with a list of symptoms and a timeline, as his forms didn't help with getting a good picture of medical history.  I mentioned that my sister had MS and my symptoms appear to be very similar to hers and was worried that this is what I may have.  He was nice enough and compassionate, but also closed-minded, and I think---lazy.  He didn't want to run the tests or put up with the insurance company's forms or hastle (in my opinion).  He didn't want to have to explain why he was needing to do another MRI six months later, after the first one was negative.

I had an MRI previously, to rule out a brain tumor on a weak open MRI machine--which turned out to be negative.  I gave him the report, and he automatically said that there was no way, then, that I could have MS.  No other exploration was made into this posibility.  So, I left him to go to my sister's doctor (my current neuro), who I have to drive for two hours to see (but hey, I trust him).

Since then, I've had other MRIs on 1.5T machines and the lesions have showed up, and I was diagnosed in February this year.  I currently have optic neuritis, and am thankful that I have a diagnosis so that I can be watched for problems like this.  

My current neuro is very busy, but caring.  My only suggestion for him is that he hires more compassionate office staff.  Sometimes they have been quite rude.  I also would make sure that he hires plenty of help to make sure that his patient's calls are responded to immediately and are never responded to later than a day.

Here's my suggestions:
1) Attend conferences and read lots of medical journals to keep current
2) Give lectures at the local MS chapter meetings or other chapters of neurological diseases--to stay compasionate and keep yourself on your toes.  Or . . . drop in a forum like this from time to time
3) Hire plenty of nurses to help you with your busy schedule
4) Don't automatically rule out a disease, until you have all the information you need
5) Don't be afraid of the insurance companies--be ready for a fight if you know what you're doing is right.  Fight for your patients!
6) Have forms that really give you a clear picture of that patient's history and the problems that they are having
7) Hire good office staff.

That's all I can think of for now.  If I had to choose between a doctor that was uncaring, but competent and a doctor that was not competent but caring--I would definitely choose the doctor that was competent.  The main thing I would tell the new interns is to stay current and work to become the best doctor that they could possibly be.  They literally have a person's life in their hands!!!!!

Deb

[Heather3418]

Thank you all for contributing this information.  I will see my Neurologist on Monday and will give her this list.  If just ONE doctor, just one...takes what was said here seriously and acts, then it was worth my time (yours of course) and my Neuro's.

Thank you again.  It all starts with "one voice"....  I truly believe that.

Big Hugs to all,
Heather