How many of you.....?

[Quixotic1]

Recently someone challenged me that people aren't dismissed, disdained, discarded or humiliated by neurologists as often as I seem to imply.  How many of you (with a brief description) have come away from a doctor visit angry, in tears, feeling humilated, or feeling ignored?  How many of you have had doctors imply that your symptoms were insignificant or stress-related or imagined?

After the second year that my first "evil" neuro dismissed me as "okay", despite worsening spasticity and then had the gall to suggest that all I wanted was to get medical testing as an attention-seeker (specifically the LP) - I swore that no matter what happen to me, I was never going to risk that with another docotr and cancelled all further appointments.  See my Journal entry.

I would just like to see a showing of posts on who has been treated this way.

Quix

[Kcates65]

Hi, I am brand new to this site but certainly not new to being dissed by my neurologist!

I came to his office 6/26/08 after have an episode involving numbness on right side of body, severe pain on left side of head, drooling on right side and vision disturbance in right eye.  And while stuck in rush hour traffic in Houston, TX.  NOT FUN!  Anyway, this guy is my mom's neuro as she has had several strokes.

I have a dx of fibro for 18 months now.  This guy does a head CT and MRI and says I have an old bleed in the brain but not a new one and diagnosed me with a TIA.  Ok, fine.

After that point he has pretty much lost interest in me except he has wanted me in his office every 2 - 3 weeks.  My symptoms have grown dramatically in that time to include neuropathy in both feet, loss of feeling in feet, sensation that the ground is shifting below me, memory problems, losing words, trouble swallowing, more vision problems, continuing migraines and worst of all, major twitching in both hands ever since the TIA which make it difficult to do my job.

I go to see him, I wait two hours in the waiting room, he has a condecending guy who comes in to take history and MINIMIZES everything I tell him including my concerns, then when the grand doctor shows up for his 60 second visit this same idiot tells him how great I am doing.  I have to fight to get a word in edgewise.

I've left in tears repeatedly, the office staff has turned me around and put me back in a room and made him go in and talk to me but by then I would just as soon not look at him!  This is a recurrent problem for this guy.

Finally about 3 months ago I became concerned that a lot of my symptoms are MS type symptoms and wanted to talk to him about it.  So I type up a short list of my concerns, one copy for him and one for me.  Short story I hand it to him and he hands it right back.  I hand it to him again and he hands it right back.  One thing I was fighting at the time was bursting into tears.  My mom, also his patient, was in with me and saw the look on my face and knew I was fixing to walk so she grabbed the paper and shoved it under his nose and said to him sternly that I REALLY WANTED HIM TO READ IT.  He read it, dismissed everything on it then handed it back to me.

I give up.  I need a new doctor.  I am glad to know that I'm not the only one going through this but I wish none of us had to put up with it.

Kellye

[Karen99]

My first two neurologists were great!  First I moved away, found another, then my 2nd neurologist moved away.  Now I have had a glimpse of a not-so-good neurologist.  So yeah, now I'm doctor shopping.  They work for me, damn it.  I pay them for their expertise, but if something doesn't ring true for me I let them know.  If they can't handle that or explain better, they are not the doctor for me.  

Before dx, I know most of the doctors I was seeing thought I was crazy.  When my symptoms got real bizarre they all dumped me. I had become a cash cow for them.

I sympathize with those in LimboLand.  If I had not experienced what I did, it would be hard for me to believe.  

[biowham]

I've got another quick story--a neuro who decided, based on sequential misinterpretation of my answers in response to what I now know were leading questions, that I had restless leg syndrome and offered me dopa drugs. Given that (1) I don't have RLS--which I'm very familiar with, and it's very "off" as a suggested dx and (2) dopa drugs have side effects of which I'm not fond (e.g., dizziness), I declined his suggested "experiment" (as he described it). He was pissed, cut me loose, and sent a letter to my doctor basically saying that I couldn't be that bad off symptoms wise if I declined treatment like that and he'd see me when I was ready to do what he said.

Bio

[PastorDan]

I understand and appreciate your spirit, and I thank Him that He has brought us all together here, in order to bolster one another's knowledge and strength.

Remember that old saying: God helps those who help themselves.  Perhaps there will someday be an online forum for neuros whose patients keep moving on to others, a forum where they could either learn something from each other, or reinforce each other's myopia.

[rudyhorse]

Wow, this is terrible so many people feeling this way because of their treatment.  It makes me want to use the "nutshell" and not for urination this time....No seriously it is sad.  Yet it taught me something....
I have to be added too.  Neuro one is/was great, that is how I knew Neuro two was the one who is crazy and not me.  My exam was not even complete, which if I had never been to Neuro one I wouldn't even know.  I wrote 3 pages of what was going on, took months of notes because I call an Ms group who said he was great--neuro two--and to keep a log.  Which he didn't even look at.  Then when I began to cry because he had Jerkish syndrome, you might not find that in your medical book, it is defined as acting callous with disregard to others feelings, needs, then he told me I was depressed.  
So I went straight to psych because I knew she was my sleep dr also and said hey Neuro two says I am depressed.  We both laughed and she did the depression survey and noted I was not depressed.  Then neuro two's nurse and staff called to see why I had not made a follow up. hum? I wonder?  I went back to Neuro one and said sorry if this is not your specialty I only like you, can we work this out with some outside help.
There is good news, he retired.  Have to love my pcp who confirmed my dx of Jerkish Syndrome, said he has had it for years if you aren't an easy dx.
You know, those with this terrible syndrome may get us down for awhile but we can't stay down.  While all these stories are so sad look how we got up and fought for ourselves and our health!  Excuse me PastorDan and others, no offense is meant, but the Lord would have to help them if we have this much fight in us and we are not healthy, imagine if we were.!  Hugs to all.
Tracy

[Cara842]

A year and a half ago I went to my neurologist for the reading of a recent MRI.  I had been on Rebif for 15 months.  The MRI, horrible symptoms and many multiple relapses showed the Rebif wasn't working.  She took me off Rebif and said the only thing that would help me was Novantrone.  After discussing the effects with her I advised her I would rather now.  

She said since I didn't seem to want to help myself and do Novantrone and would just be doing maintenance drugs that she would rather I continue on with my Family Doctor instead of her.  She advised if I wanted an MRI, I could request one from my Family Doctor every 4-6 years.  I was shocked that she had dismissed me after a year and a half of going to her.  

The entire 15 months she dismissed the horrible chronic pain I was having in my hands, legs and feet and told me I needed to just accept that I had MS and learn to deal with it.  

At the time I was on 300 mg. per day of Gabapentin.  My family doctor say me for another reason and saw how much pain I was in and bumped it up to 2400 mg. per day.  It was such a great relief.  Unfortunately, due to the horrible pain I had been in and other symptoms that consitently got worse over the course of the 15 months, I had to leave a job I loved of 23 years.  Had she bumped up the meds to help me function during the day, I'd still be working and not off on permanent disability.

I just found a new neuro that is working with me on pain management.  I'm now on a trial month of 3600 mg. per day of Gabapentin, though I haven't seen any improvement yet in my pain level....I always hurt.  But, at least he's working with me.  I just finished a long round of 4 MRI's and will receive the report next week.  He wants me to try Copaxone since I seem to be pretty stable right now.  Only one relapse last year and one so far this year, compared to the 8 relapses the prior year.  

My new neuro was shocked when I explained that my last neuro fired me and about the MRI's not being necessary for several years. Thank goodness my Family Doctor was willing to help and this new neuro seems to want to help.

Sorry this wasn't so brief and to the point.

This is such a great site !!  I just found it today.