What is up with repeating MRIs and bad bedside manner?

[hmarie47]

I find my current neurologist frustrating, mostly because I like a lot of information, and she seems convinced that I am somehow better off knowing little and taking her word for things. I do not get that.

FYI: I am just ranting here, because I suspect others have similarly frustrating experiences.

Anyway. I recently went and had yet another MRI done (which, for me, means taking meds that make me sleepy, STILL having about an hour's worth of awful claustrophobic panic, a generally crappy day, and a hefty copay).

So I go a couple weeks later, see neuro, and she tells me about all 3 of the new little baby lesions in my brain. Awesome. Apparently they could grow up to screw with cognition, but then again, they may not. Very helpful science.

Now, I started copaxone a few months ago (so my understanding is it starts actually working now-ish), and don't have any new symptoms, so I would be disinclined to be interested, but apparently this is information people need.

WHY. I asked. No good response.

Here is my reasoning: whether or not I have some new lesions seems to say little about the efficacy of medication: it only reduces progression by 30% if I'm lucky, and no one can know how fast I was/will be progressing, so WHAT can an MRI be telling my neuro? Even if tomorrow I have 30 new ("silent" or not) lesions, what if without meds I'd have 90? It also apparently doesn't help warn me of upcoming symptoms, because really, they might do nothing, or I could have a big sucker of a lesion grow tomorrow on my spine and jack me up all kinds of ways. So really, I get to be marginally freaked out without any actual facts. My favorite.

I got the stupidest answer ever.

"Well we should keep track and if you have more we will switch your medication." What? No.

"WE" don't make decisions like that; I do. "WE" can discuss my medication: I make decisions. Hello, autonomous adulthood.

I do not care / will not care whether my neurologist wants to keep track of my lesions and their growth if/until someone (preferably the, you know, doctor who treats me) could explain the efficacy of this irritating process.

Kind of like how I don't care how much I weigh until I need to buy different pants.

Time for a new neuro. Anyone know someone who actually is willing to have non monosyllabic conversations with their patients in NYC?

[Peggy W]

Hello: my first reply on this site had to respond to Marie47
I found that if I cannot comm. w/my Neuro time for new one for sure!! I have an appt w/my 4th Neuro in Dec.
They do not teach comm. skills in Med School!
A Neuro treating MS should be more tuned in to a MS patients difficulty at comm.!! IMHO!!
New dr is MS specialist hope he will be better.
Don't let them get away with this treatment!!
My Dr.s told me so little I had to use these message boards for ans.
Hang in there goog luck to us all😀

[odd duck]

[F]Hi hMarie 47,

I was diagnosed 12/1/12 after almost 3 decades of symptoms and doctors that don't listen. When I was diagnosed I threw a major temper tantrum in my local ER (where I was a frequent flyer) when a nurse told a new doctor who had never seen me that I was "believed to be bi-polar".

I insisted that they stop blaming everything that was wrong with me on mental disorders and start looking at the physical. Namely, why was my left side completely numb, why could I not control my bowels, and most importantly WHY WAS THERE A SHADOW ON MY BRAIN AND WHY WAS I THE ONLY ONE WHO CARED! And why did my head feel like I was having an aneurysm?

If they could figure out what was wrong with me then I insisted they transfer me somewhere with doctors who could. They did, all the mental disorders where thrown out the window, I had my MS diagnosis. In fact, the psychiatric drugs I had been placed on over the years where causing depression, mood swings, etc., once I was taken off I felt so much better mentally.

The hospital I was transferred to has an MS Research Inst. and they arranged an appointment for me with an MS Specialist. Funny, for years all my dr.s had told me to stay off the internet regarding health issues. When I was discharged I was given a list of websites to go to for information regarding MS.

My point ... One of the first things I learned was ... If you don't think your doctor is listening to you or providing you with the information you need to make informed decisions about your health - it's time to get a new doctor! I would strongly suggest going to the National Multiple Sclerosis Society website find your local chapter and then find the nearest MS specialist near you!

Good luck. And remember, there are no stupid questions. Also don't worry about asking the same question more than once or having to call back because you forgot to ask a question. I've learned to keep a list of questions and I still forget to ask something. My care team just laughs, calls it MS brain or cog fog. [/FONT]

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[lstrl]

Wow, and I thought my case was ridiculous while I was waiting to be diagnosed. At least from the first neuro I saw, it looked like pretty much from the beginning, I was a rule out MS patient (my case seemed pretty clear cut though).

It sounds like you are definitely making the right choice searching for a new neuro. I'd be leery as to why my dr would choose to withhold information from me. How are you supposed to make any educated decisions if they refuse to educate you? That's absurd. It kinda makes me wonder (after my own experience with a bad neuro) if it's because your neuro really isn't educated enough about MS to be treating it.

Hopefully you can find an MS specialist nearby that you can go to. I know I feel much more comfortable going to someone who only deals with MS. At least when I walk in there, I know she knows what she's talking about.

[hmarie47]

Oh, this is why I am so annoyed with my neuro.

Not only is she an MS specialist in a major university hospital practice, I'm pretty sure that she is the head of the department and also in charge of all the teaching that goes on. So great.

The nurses and nurse practitioners (and even the residents--hopefully they don't get their common sense/decency beaten out of them over time!) who work with her are more helpful, but feel inclined not (or are not technically allowed, perhaps) to give me certain information.

Obnoxious.

Anyway. I'm moving soon so hopefully I can find someone who survived medical school with most of their ability to communicate in functional way intact.

I'm related to and know a lot of nurses: I now make a lot more jokes about how much I'd rather see a nurse who knows what is going on than any doctor.

Because it's true.

[22cyclist]

What information will she not give you that you would like to know?

Lisa
Moderation Team

[hmarie47]

I'll make a list, because law school makes me like them.

* Whether and why it is efficacious to have an MRI every six months even though no one has any interesting thoughts about my new lesions/they are expensive and cause me serious panic attacks.

* Why she keeps vaguely recommending that I switch to an oral med, even though I've only been on copaxone for five months and the side effects of new medications terrify me

* Whether she is capable (the answer is no, because the science isn't there; I just want to hear it) of telling me whether 3 new "silent" lesions is relatively bad or good

* Why I was prescribed nasty steroids after my flare up ended--which caused side effects that were actually worse than the flare up (I've had to take OTC medication for acid reflux for five months now, and ended up in the ER with heart palpitations), and how to avoid this stupid over medication in the future without refusing all steroids, ever, because clearly I react strongly to them (sh*t made me see double and want to kill people; MS has not yet done this to me.)

* Why it is remotely a good idea to start on the double dose of copaxone when it becomes available when I am a tiny person and the whole double dose thing has only been tested by the company standing to profit from it

I get it. There isn't good science on predicting the course of anyone's progression. I don't expect her to be able to tell me exactly how screwed I will be in five years, I just want an honest conversation that starts with, "statistically...." and ends with, "but I'm not God."

Also, telling me "don't get overheated or stressed" is both ridiculous in Philadelphia (where it is HOT in the summer) and when I am in law school. I am going to be sweaty and stressed out as long as I am capable of working, which I will always be required to do in a nasty polyester suit. So. I would enjoy some realistic advice.

I have gotten some realistic advice from assorted nurses, hence the nurse = respect, neurologist = eye roll habit.

[Pipes123]

My neurologist wanted me to take Copaxone. I wanted something stronger after years of untreated MS. If I were in my 20's, I might feel the same way you do. Here are some thoughts. Take whatever is useful as I can't know all of what was said.

Next time you're asked to take a treatment that you disagree with, say no. If the doctor persists, ask the sort of questions you're asking here, and if not convinced, say no. Don't sign consent forms and don't show up for treatment you don't agree with.

Also, if you can, try not to waste too much of your time and energy being angry when doctors try to convince you to do things you don't want to do. You don't have to comply. Being a patient is a miserable experience. Always. My experience has been that it is slightly better and my chances of getting the best possible care from my doctors go up when I only let them see that I am angry about failures that are outside a reasonable standard of care.

I'm not saying your doctor didn't screw up re the timing of the steroids. I'm also not saying your doctor didn't disrespect you. I'm saying that a few of the issues you mentioned might not have been knowable in advance without reading your mind or knowing you well. No doctor is psychic or has that kind of time available. Especially when you are a lawyer and have staff working for you, you'll find that forgiving people for being human goes a long way.

I couldn't tell whether you want to practice law. I'm a working lawyer, for now, and I often don't wear suits to work. I also don't buy polyester. ; )

[hmarie47]

This reply is very late, but important questions.

1. I would love to be a lawyer without the daily suit. I like the style of the public interest attorneys I've worked with: "business" casual in the office, suit stashed in a closet, jacket goes on in the doorway to court.

2. Oh, I know. Getting convinced to take a 200lb man sized dose of prednisone will be the last time I listen to a bad idea--that experience was a learning one, to say the least.

"oh, we always prescribe this dose for everyone." LOL.

[suziq38]

I would just tell her what you told us.

[Marco]

Here's a very different perspective about doctors and patients with chronic illnesses:

http://more-distractible.org/musings...hronic-disease

[KateM]

Well said..

hmarie47, you have summed up the frustrating roller coaster I've been riding the last 6 months. While my primary tug of war at this time is over DMD medication that I am in no way comfortable with, the catalyst is that dang MRI. A test that does me no favors what so ever. I love your post! You are the Bomb!

Marco, thank you for posting the link. It is a miraculous thing to read. I loved it and it has helped put me a peace.. even if for just a minute.

[Sensible]

Difficult Neurologist/Changing doctors

My story with a very difficult neurologist. I live in an area where pretty much the only neurologists are in the same clinic. Other neurologists that would be considered specialists in the area of MS are 1 1/2 to 3 hours away. Not good for a lot of appts. I absolutely could not get along with my neuro. So I asked for a new one within the same clinic. Nope. They refused to let me see a different doctor. So, now I have been out of work and it will be 1 1/2 months on STD until I see a new neurologist that works with pain patients in another clinic. I have no idea where that will lead me. I have never felt the need to change doctors. I take their experienced opinions and then make a decision of whether or not I will follow them. This doctor just argued with me. I hope everything is working out for you. Getting a doctor to help you and work with you shouldn't be another problem to face with the already multitude of uncertainties when living with MS.