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

[Sunnytoday]

Thank you for bringing this back. I had a rough day Friday and was considering tossing it all out the window including this forum (MS has been ruled out and I feel odd being here)... it was nice to understand I'm not alone in the fact that dealing with neuro's who don't seem to care is getting old.

~Sunnytoday~

[Sarahsmom46]

Wow, this is a great post to bring back.  Everyone is bringing back old posts lately and even though they came out a while ago, they are still timely.  I missed this one as it was before I joined the MS forum. Thanks so much.

My experience with this subject.   I have developed a "jerk alert" intenna that goes up when I am meeting with an doctor now.  When I hear him/her starting down the path of "its psychological or stress or anxiety" that is the cause of me falling down, not being able to feel my legs below the knee, having spots on my brain and spine, having positive neurological signs, ets, then I head for the door and start looking for someone else. I have been pretty lucky so far with my MS diagnosis process in that I am not having that particular problem.  But it did happen with my first neurologist and if it weren't for this forum I would probably still be his patient not realizing I could fire him and get someone else.  

I don't have a problem with a doctor thinking that I may be having some extenuating circumstances, stress or whatever, that may be contributing to my health issues, but when they start telling me that at my very first appointment then now I know it is time to move on, immediately.  

Thanks again you guys for bringing this post back.  It was very interesting to read all the other members' experiences.  And Trulyfrustrated, I sure hope you get the care you need out of the VA.  Stay on them.  

Julie

[PastorDan]

Another thread through which I read perhaps 15% before realizing it began months ago.  It all sounded very timely, however.  It's really quite simple: doctors know everything, specialists know more, and patients know either these two facts or nothing at all, or else they make stuff up.

[Ufrustrated2]

i had an infection in my CSF in 1987, plus the finding of O-bands then just prior to disk surgery. Surgery was canceled. I was having "episodes" then but didn't know what they were.

That was the first time i saw a neuro. He was called in to evaluate me for possible MS.  He put in his report the O-bands were a "false negative" and that the evoked vision test was too expensive and that the hospital there didn't have the tests, but that they may help the evaluation.  Maybe he meant "false positive"? All three CSF tests from that time indeed showed the O-bands. So, for him to dismiss me and the O-bands as a "false positive" is odd. The military discharged me around that time and said the VA would follow up on that.

it took the VA 22 years to do another LP. During that time period of 22 years, and with a slew of physical complaints, all neuro's and others just labeled me whatever and dismissed me as "nothing wrong"...must be stress, must be me, could be your heart, fatigue, depression, etc etc etc.

so currently, even with a new neuro and in a new town, the neuro at first dismissed me as chronic fatigue or fibro. i demanded the LP but he said no. then he said he would do a MRI and if that came back with something he would do the LP. can't anyone see where this is going?

that MRI came back with "demyl-disease" which the neuro just couldn't believe it and wanted to basically dismiss it. i had to demand the LP and reminded him i am a service connect disabled veteran and it is my right to the test considering my med history with regards to the test results from active duty. he ordered the LP, and sure enough it came back +O-bands.

he never went over the results except to say the O-bands were there but he couldn't understand why due to other things were not text book in my case. said my cspine was normal although if one reads it, it reads like it is messed up. he mentioned starting meds for MS and said i would like a second opinion and he agreed to that.

he sent me to a VA MS clinic. so I go there, sight unseen by anyone there before and the doctor says right off the top, your problem is migraines. he didn't even have the O-band report!!  i had those. he went on and on and on about migraines. i told him he was going to have a hard time selling that to me. the dept head came in then. very nice man, articulate, older, wiser with little ego compared to the younger neuro.

he did a very thorough exam and they went on about migraines and i said i haven't had one in a few years. the younger neuro went on about they have new meds for migraines, etc. the dept head said they wouldn't do any good if i haven't had a migraine in so long.  then i showed him the O-band report and the discussion for the day was closed. the wiser doctor said, migraines don't cause O-bands!  we need to rule out other diseases and get to the root of that so we can get a treatment plan.

for the first time in 22 years with the VA i felt like someone finally was actually listening to me and not brushing me off. i felt like a human and not a reject. so he ordered some more tests. that MRI came back positive for demyl-disease too in the brain. i think the c-spine didn't show lesions. can't recall if a T-section was done. but that is the section where i get really odd sensations too.

on my way out of the MS clinic and on to the airport, the young neuro got up in my face and said, "your problem is migraines"!!  gee, i couldn't believe it. this guy was really pushing the issue. here i am, a guy who has some health issues and this young neuro already had me diagnosed, didn't even have all the paperwork much less had never even seen me before, and he is up in my face about his migraine theory. Anyone really wondering why i have a trust issue with this place? ;-)

so, i get back home and see the local neuro. i ask him what my diagnosis is. he won't say! said it could be anything and the tests are subjective except for the O-bands. he is leaving it up to the other clinic. at least the MS doctor has some wisdom and age and obviously the intellect. i'm sure hoping and praying he does the right thing and not toss me into the VA void.

being a brainiac does not inclusivly equate one to having wisdom. so that is my experience with neuros!

sorry for the long post. but i think it helps me to write these things as I have never done this before. mostly have just kept it to myself.

[jensequitur]

I'm one of the happy few who received a diagnosis quickly, within a few months, without being blown off as being crazy or trying to get attention.  So I guess I'm lucky!

However, I want you guys that are still searching for a good neuro to know - once you're diagnosed, you're not out of the woods when it comes to being listened to.  Sometimes my my neuro makes me feel like I'm crazy, and I'm the one with neurological damage!

The cognitive changes were one of the first things I noticed as being a problem, so I mentioned them to my neuro.  He told me that my MRI didn't show lesions in the areas that would cause the problems I described!  Then he told me I was just 'confused' because of my diagnosis.  Phhhbbttt.  

It took some dedicated pushing from me to get a neuro-psych exam - and on the request for the exam, he wrote that 'patient appears normal on exam!'

So this neuro obviously doesn't get all the subtleties of MS symptoms, or their implications.  I shudder to think how he'll react to my weird little seizures I was having last month.  

Honestly, you guys, you have to be your own patient advocates, and if your neuro can't understand or help you, move on.  I know how difficult it is - I ask myself once a week if I should look for another neurologist.  At least he's easygoing when it comes to requesting additional testing - if he wasn't, I'd be going to somebody else.

[nette573]

I have seen 2 neuros.  The first could not find my lab reports.  All he did was write.
I am currently on my second one.  2 visits and he dont remember me from the first visit.
Lynette