How do you talk to your neurologist?

[Mummy76]

I know this sounds like a strange question but at my last appointment with my neurologist I felt like I walked out of there without getting answers to some of my questions even though I asked them repeatedly.  My DH was there too and he seemed confused when we walked out so I know it wasn't just me!  I don't want to be rude to my Doctor but I need answers!

My two questions were:

1) If they did an MRI of my neck, is that what they mean by a "spine" MRI. (I asked this as they only did an MRI of my head and neck but she said I had no lesions on my spine at all)

2) How will I know what a relapse is? (I asked this because she felt reoccuring ON was not a relapse and any of my other symptoms would have to be severe to be considered a relapse)

So, I guess my question is, does anyone else have troubles getting their neurologist to give a straight answer, and if so, how do you change that?

[Jazminedawn12]

Hi, I'm 14 and I've been having headachs. I had then when I was young and they stopped. They started up again when I was 12 and then stopped again. Now there so bad I get dizzy and I forget things. I went to the doctor and they said to see a neurologist but my mom isn't taking it seriously so this is my only choice. 2 weeks ago the bottom of my right foot started tingling. Last week the tips of my fingers wants numb and started tingling as well. Now I'm hearing things and I start to hyperventilat when I hear these noices. When I was in my room, it was just me, I heard kinda like a little girl talking in my livingroom. Just a few minutes ago when ny mom got home I got in the shower and I hear something hit the side of the tub and I got scared and started to hyperventilat, then I started to get dizzy. I also have glasses and I know it's not my eyes but just incase I'll add that! Plz tell me what you think.

[supermum_ms]

Hi Jazmine,

Your question has landed in the MS community on the end of an old 2012 thread, if you are googling your symptoms please understand there is no reason for you to start becoming worried that what you've been experiencing could mean it's something like MS.

Children can experience headaches for many different reasons, there are different types of headaches and it's possible the type of headaches you've been experiencing are migraines.

Auditory hallucinations can be associated with migraine headaches but it's not very common and why it's usually a good idea to have a medical check up with a neurologist to determine the reason why your experiencing what you are.

Hallucinations are often confusing and can be very scary, if you are hyperventilating and getting lightheaded or dizzy it's likely because you are breathing too shallow and too fast because you've had a fright, the hallucinations might even be triggering panic attacks.

Due to you only being 14 years old, it's very important that your mum or dad know and understand everything that's going on with you....it can be very hard to explain and understand what you mean is happening if you get upset in the telling, so it might be easier to explain and get her to understand it all better if you write it down and ask her for help in understanding why this is happening to you.

Another thought is to see if your school has a school councilor or psychologist and ask for their advice and support in how to cope with these experiences..

I hope that helps........JJ

    

[HVAC]

Neurologists are real brainy and do not always communicate well with patients.

There are three kinds of MRIs Brain, C spine which is the neck, and throracic spine, If You only have ON then they would normally only do a brain MRI. The trick is if your sypmtoms are in you head then a brain MRI. Most symptoms come from the brain. Those with Primary progressive MS get spinal MRIs. Most MS patients only get brain MRIs. Most of us move too much for spinal MRIs and they are inconclusive.

You have to have attacks in two different place in the body at two different times. For example ON and left side tremors. So you have ON and then six months later you get left side tremors.

You could be diagnosed With CIS clinically isolated syndrome meaning you have one episode. Some neurologist want to follow you overtime. My doctor followed me two years which is common.

Oh and with Neurologists let them do all their testing with out saying anything and ask questions afterwards.

Also the most important part of the exam is the neurogical exam. That is the reflexes etc. I politely ask him tto explain what he is doing.

I was in with my neuro and he had a student. When I asked a question he would turn to the student and explain it medically. I politely said Doctor over hear asked the question .

Alex

[sllowe]

Hi there,

You've been given such good info I just wanted to add, that it does take to develop a relationship sometimes.

I felt like that movie w/Adam Sandler - 50 first dates? The one where Drew Barry Moore new nothing from the last date to the next w/Sandler? I had to re-repeat re-cap every visit, and they were every 3 months - talk about frustrated and confused.

I feel if you have a good doc, then find a way to regroup before the end of the visit. i.e., Have those questions jotted down, briefly look at them and if unanswered, pause, look the doctor directly in the eye, and say "Ok, to re-cap so I can remember ....  and then fire off those few questions."

This way you are locked in visually, you've organized the unanswered questions and set up the communication to gain responses. Basically, bottom line him/her.  

-shell

[teenyturner]

My GP told me that neurologists are, to the medical world, what orthopedic surgeons are to the surgical world.  In other words he was warning me to not expect good bedside manners.

Must be a world wide phenomenon.

Regards

[figuerpa]

I had problems with my neuro at one point. He always seemed so rushed that he was in and out as fast as he could but one day he got up to leave and I said "I am not done yet, I have some questions." He then turned around sat down and listened to me.

I didn't want to be rude but he is getting paid to be my doctor so he needed to listen.

The thing to remember is you hired the doctor when you started seeing him/her and you can fire him/her for not being the doc you want them to be. doctors need to understand this too.

I wish you the best of luck.

Paula

[doublevision1]

Another thing I do at the start of each appt is to ask him how much time do we have today?  He's usually generous with his time, many of my appts have lasted 2 hours and he's stayed to answer my questions after the office closed and the rest of the staff went home.  On one occasion I felt he was rushed, and was rushing me, and I didn't get to everything I wanted to cover.  So lesson for me, in addition to asking how much time he has for me, is to better prioritize my questions so I at least get to the most important ones.  

This doesn't necessarily address that your neuro didn't answer your questions, except that if she was perhaps pressed for time she may have not been listening as well as she otherwise might have.  I'd encourage you not to throw in the towel just yet.  See her again to get a better sense of her style and whether or not you're comfortable continuing with her.

Just curious: are you being seen at the U of C MS Clinic or are you seeing a neuro in the community?

[Mummy76]

I think what you are saying is a big part of it... I think the neurologist doesn't fully listen to my question so she can't really answer it!

[Mummy76]

Thanks for your answers!

The reason she felt the ON wasn't a relapse was because she felt it would be rare for the ON to come back in the exact same place twice in a row.  She said that there are so many nerves, she would have expected a different nerve to be affected if I had a relapse.  Also she said it can take up to 6 months to recover from an episode so she feels I'm just having the ups and downs of recovery, even though my vision is getting worse now.  I hope she's right!

[Valkyrie568]

That sounds like some of my dad's appointments with the worst of his Neuros! lol

[LisaJF]

Anytime, any day! Hahaha!  He'd probably kick me out of the office. ROFL.

[anon07072023]

Lisa, can you come with me to mine?  Ha ha...   :-)

[Valkyrie568]

I think it would be worth joining a local MS support group, just for the benefit of word of mouth opinions on the locally available Neuros.

I am new to the MS journey, but unfortunately not to the quest to find a Neurologist with some communication skills. My husband has been dealing with a seizure disorder for 30 years, my dad has been dealing with 'atypical Parkinson's' (but it seeming suspiciously more like PPMS the more I learn about it) for 20, and a friend I work with has also had a seizure disorder for over 30 years. My husband, Dad, and friend have each gone through at least 10 Neuros each and didn't feel like they were in good hands with any of them until the friend finally found an exceptional one. He was kind enough to pass the info on by word of mouth to my husband and I. He routinely spends over an hour with you on each appointment, has excellent listening skills and explains things in such great detail it is reminiscent of a college lecture. My dad is doing very badly but he is considering making a 1000 mile trip to see him. He looked over my dad's medical records and did a video conference with my dad and his PT so he could watch his movements, etc. for free and to have a better idea how his actual medical condition would tie into mine and the fact that he is actually interested and involved in ongoing research. So there are really good Neuros out there, they are just very rare! And patient word--of-mouth seems to be the best way to find them.

Our doctor is considering moving across the country to be closer to family. If he does that he will have at least 3 patients who are willing to fly 2000 miles to go to the doctor!

[jenphilly]

I figured out how to talk to my neurologist after changing to a new one :)   Not sure why neuros seem to have really poor 'bedside manners'....  But if you can find another, make an appointment and give them a try!   Can't hurt to interview one or two til you find someone you really like and can communicate with...  

Good luck!!

jen

[LisaJF]

Most are like that.  There are a few and far in between that actually attentively listen and take their patients seriously.  At least initially, those who have changed Neurologists until they were satisfied with their rapport can state otherwise.  But I think most here can state they have gone through more than one Neurologist from the get-go in order to find competency, compassion, attentive listening skills, professionalism, the ability to think "outside the box".

The only thing you can change is the doctor your seeing, because there is nothing that you can say or do that will elicit an appropriate and professional response that you DESERVE.  Then again, some people's choices are limited in who they can see or how many Neuro's are available to them.

Then there's a direct approach where a person can try to bring up the issue to the doctor's attention and discuss it to see if that would help with the rapport, but there's no guarantee that it would.

I know I would point blank ask my Neurologist without any reservation whatsoever. They are getting paid for their expertise and if they lack in that area amongst other types of expected standard of care, then something needs to be said.

Lisa

[anon07072023]

That's a good question - "how do you talk to your neuologist?"  Unfortunately, after 3 different neuros, I still haven't figured that out.  

Mine talks in circles and never answers my questions. I've done tons of research on MS, so I am educated about my disease.  When they're not talking in circles they're not listening to what I'm telling them.
Not sure how to change that.....

Good luck,
Kelly  

[doublevision1]

It took me a few visits to figure out how to best communicate with my neuro.  I have found that my questions need to be very specific and precise in order to get the clarification I am seeking.  At first I thought he simply did not want to be direct but I've learned his style is not to necessarily offer up a lot of details but will respond with them if I ask clearly.  This is where is helps to become as educated as possible so he can gauge my level of understanding about my MS, and about MS in general.  I think I may ask for more explanation than some other patients who may be more passive and figure if they need to know something the doctor will tell them and are fine with that.  

I have also learned that my neuro won't engage in speculation (what ifs) - this is probably a good thing - so I don't waste his time anymore trying to extract responses to theoretical questions.  And I have learned that it's not necessarily bad when he answers with "I don't know."  At first it frustrated me and I thought he was being dodgy, but the truth is that there's a lot they just don't know, and I guess better to have a doc who is honest about that and not so ego driven that they need to be seen as having answers that truly don't exist - yet, anyway.


To address the questions you asked your neuro:

The cervical spine (comprised of seven vertebrae)  is the technical name for the neck, so yes, you have had a spinal MRI - well, a partial one anyway, as the other part of the spine that may be imaged for useful information with respect to MS is the thoracic spine, which is comprised of 12 vertebrae that connect to the ribcage.  This is the lowest level a MRI of the central nervous system would go, as the spinal cord does not extend for the full length of the vertebral column (L2-L3 of the lumbar spine and lower).

Brain and c-spine MRI is most commonly MRI'ed for dx and monitoring of MS.  C-spine lesions occur in MS more frequently than t-spine lesions.  I believe t-spine typically only looked at if symptoms/impaired functioning indicate lesions may be present in this part of the spinal cord.  My understanding is that imaging of the t-spine is more difficult and it is more likely that even when there are lesions in this part of the cord, they may not be detectable on MRI; even when symptoms strongly correlate with that area (eg: "MS hug" occurring in the mid-lower torso).

Re: relapses, it isn't always easy to determine when a relapse is occurring.  Typically a relapse presents as new symptoms or worsening of previous symptoms that last > 48 hours, with a space of at least 30 days since the previous relapse.  This is a guideline that neuros tend to go by.  It's important to rule out the possibility of a pseudo-relapse (eg: a cold or some other infection) in determining if a true and new relapse is underway.

A MRI with gadolinium can confirm that a relapse is occurring, though by the time you get an appt, if it takes several weeks, lesions that previously would have enhanced may no longer do so.

Did your neuro say why she thought the ON wasn't a relapse?  Or is that the question she wouldn't answer?



Also, her comment re: symptoms having to be severe to be a relapse, this need not necessarily be the case.  MS relapses range from mild to severe.
In my case, my first sign of MS was Lhermitte's Sign, a tingling from the neck to the feet upon forward flexion of the neck.  It was certainly distinct and noticeable, but definitely not severe, meaning it wasn't painful, thew sensation immediately retracted with head position, never required me to take ill time off work, etc.   Some people with MS never have a severe relapse/symptom, and with a lengthy passage of time, doctors can look back and determine that this type of patient was one of the lucky few to have 'benign' MS.  There is no way at the outset whether one will have a benign course, so this dx is really a retrospective one.

She may be correct that you're currently not having a relapse, but it sounds like she could be a lot more clear in helping you understand the basis for her thinking.  In fact this is how I often will phrase my need for clarification  when I just don't get it, or when I'm doubtful of what a doctor is telling me, eg:  "Help me understand why......(you say this or think that)....because I thought........"  

Like many new relationships, it will take time to figure out how to communicate most effectively and make the most of your appt time.  I'd suggest continuing to bring someone with you until feel you no longer need that extra set of ears.  Even when they also leave the room as confused as you are, for what it's worth at least you know not to second guess yourself and that in fact, your neuro was simply not being clear.