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147426 tn?1317269232
How many of you.....?
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.

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Page 5 of 5
495035 tn?1221756692
It would seem that nearly everybody has had a really bad experience with one doc or another and been dismissed as attention seeking or crazy, which is so disheartening for people, no wonder prople get depressed when they are at the mercy of a bad neuro.
I hope you will be able to put these posts somewhere for the new people on joining the forum so they can see that they are not alone
CJ
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335728 tn?1331418012
I have seen three neurologists.  The first one was in 1993 and she was WONDERFUL!  But she moved back to England and I was tossed into the lap of the Evil Neuro/Researcher number 2.  He is the neuro that diagnosed me with MS but I didn't stay with him for very long.  He has no personality, has very little time for women, doesn't like to be stumped on anything because he thinks he knows everything.  I then proceeded to my 3rd neurologist.  Now she seemed alright and followed me up every 2 years with an exam and then BANG in October 2006 I started to have problems with the pain in my temple and my left eyelid drooping.  She treated me with IV Steroids and weaning prednisone and sent me on my way with no diagnosis.  Then in Feb. 2007, I was struck with this pain again.  I attempted to make an appointment to see whom I considered my neuro and mistakenly assumed that she would be there if I got into trouble but apparently I wasn't sick enough to see until 3 days later...I was in excrutiating pain and needed help NOW!  I went to a clinic that my gp works out of and saw a dr. there and she referred me to a neuro at the University...low and behold it is the second neuro that I HATED but I had no choice.  He sent me for IV Steroids and weaning prednisone and diagnosed me as having Paratrigeminal Neuralgia and he said "I will treat you for this as long as you see no one else about this."  Of course I agreed...he was going to treat me!  Well, he treated me alright...he overdosed me on several medications, never did an MRI until I had severe vertical double vision (for which he advised me to see my gp to see if she could get my emotions under control) 10 months later and when the MRI came back positive for MS...he advised me to seek a second opinion!  A lot of bloody help he was!

So I go to my gp and tell her that the neuro at the University wants me to get a 2nd opinion so I would like to go back to my 3rd neuro.  She states that she is not sure that the 3rd neuro will see me because of the incident last February and the fact that I did not give her a chance to see me!!!!  She was the one that wouldn't see me for 3 days and I needed help that day and after the 2nd neuro said he would treat me if I didn't see anyone else regarding this what the he** was I supposed to do???  I explained all of this to my gp and she apparently sent a letter to Neuro number 3 "apologizing" for the "mistake in judgement" (what a friggin joke...her panties were in a knot cause I saw someone else because she wasn't doing her job!) and she agreed to see me.

I saw her in December of 2007 in one appointment and she deemed my MS as being "in-active" and said that all my problems were due to the "other" neuro over-dosing me on my meds!  Well I am off all of the meds he had me on and I am still having difficulty cognitively, pain in my legs, problems with my equilibrium, severe sensitivity to heat, overwhelming fatigue and deteriorating eyesight (that has been checked by the eye specialist and deemed caused by something neurological)!  However, I am still not on any of the disease modifying drugs.  This evil neuro also told me at my appointment in Dec. 2007 that she will not be dealing with me directly, that I will have to deal with her through my gp.  My gp received a letter from the evil neuro stating that my MS is "in-active" and she will not even consider that any of my problems are due to MS.  My gp has stated loud and clear to my face that "I really don't know very much about MS"!!!

So, I am not  a limbo-lander per se...I have been diagnosed with MS twice you could say but I am not getting any treatment for it because my evil neuro has deemed my disease in-active by the MRI that the second evil neuro did in Nov. 2007. (bloody lesion counter!)  I have had one appointment with the evil neuro number 3 and I don't see anymore in the future because no one believes that I have MS and that it is active (at least anyone in the medical field!).

I don't really know which is worse...not knowing what it is that is causing the debilitating difficulties in your life (limbo land) or having a positive diagnosis of MS TWICE and still being told that your disease is in-active and therefore requires no disease modifying drugs which in turn will mean that I have nothing to slow down the disease process and the results could be catastrophic and there is nothing (so far) that I have been able to do about it.  I have been taught through this whole dilemma that I can't trust people in the health profession much...why would I when my gp has blatantly lied to me several times and my evil neuro won't offer me any help and has made me feel totally alienated.  Even the MS Society wouldn't help me find a new neuro for fear of me being black balled by all of the neuro's...I figure that it wouldn't make much difference...I am getting no help now, am I?

Rena

Rena
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307874 tn?1242759398
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
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338416 tn?1420049302
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.
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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.
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751951 tn?1406636463
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.
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559187 tn?1330786456
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
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486038 tn?1300066967
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~
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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.
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764912 tn?1322715443
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
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751951 tn?1406636463
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.
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378497 tn?1232147185
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.

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562511 tn?1285907760
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.  
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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
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701252 tn?1234379289
I saw a Neurologist for the first time this past November when I first started having symptoms.  Basically he said I was “fine” and I need to stop looking on the internet.  

If I haven’t kept doing research online, I probably would have never been Dx by a competent Neurologist two months later.  I probably wouldn’t fount out until I would have been rush to the ER for now being able to stand up during the beginning of a replace two weeks after diagnosis.  

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338416 tn?1420049302
Is it just me, or are specialists really the worst offenders?

I've heard lots about how I should see a specialist at least once... but the experiences of so many here with MS specialists makes me really leery.
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230948 tn?1235847929
Neuro in my visit to him 3 times in 2007 told me at the end of it maybe i had "samantha lewin disease" (my name)

and at this first appointment going back he said "i dont have your writtian notes so cant compare to last time,but i think i remember you??" we can order the brain MRI but i doubt it will show anything new"

ARSEHOLE

Rheumy

"i cant help you you dont have fibromyalgia but i see you in apin but cant tell you why" hopeyour better soon.

DOUBLE ARSEHOLE

THAT FELT BETTER LOL
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620877 tn?1282767697
Here is my "evil neuro" story:

I too have been dismissed (neuro #1) and told that I was being too "aware" of my symptoms (neuro #2).

First neuro:  wanted to "rule out" MS - did an MRI brain without contrast and an ENG/VNG test.  Came back for my results:  everything "normal".  He said that because the MRI is normal, I don't have MS.  He thought that I might be having "some sort of sensory seizure".  When I began to ask questions, he stood up & shook my hand and ushered me out of his office. The appointment lasted 13 minutes.  I discovered later when requesting my medical reports from neuro #1, that the radiologist noted a UBO on the corpus callosum - unknown significance.  Also, the doctor who performed the ENG/VNG test put in his notes to the neuro that he felt that a CNS disorder should be ruled out as a cause for my vertigo.

Second neuro (at a very well known medical center):  The first thing he said to me upon meeting me:  I can't guarantee that we are going to be able to help you. Okay.  Well nice to meet you too.  I told him that I had my symptom list, and a timeline, which he declined to look at.  He wanted me to "tell him about my symptoms".  He did a neuro exam & told me that my exam was "mostly normal"....He also wanted to "rule out MS".

In my final appointment to go over the tests (EMG, MRI (no contrast) of T & C spine, blood work galore and VEP - all normal - he tells me that all they can find is a severe Vitamin D deficiency and that I am "too aware of my symptoms" and that "a lot of people have these same symptoms"....really?  A lot of healthy people experience vertigo, numbness & tingling, bladder issues, hip pain, blurred vision in one eye/pain in eye, sharp burning pain, fatigue, sensitivity to heat, sharp, quick pains....okay....well I guess I am normal then!  He told me to go home & "try not to think about my symptoms so much".. he also said that he "thought that something was going on, but until something shows up on a test, there is nothing he can do"...

Just recently I received all of my reports from that well known facility, and in neuro #2's chart notes - he noted that I have "left disk pallor" in my left eye.  I asked in the neurology "ask a doctor" forum here on MedHelp, what that meant & Dr. Kantor told me that it usually means that there has been some previous damage to the optic disk.  He suggested seeing a neuroopthamologist.

Why didn't neuro #2 tell me this?  Who knows.  Why didn't I see a neuroopthamologist while I was at the well known facility?  Who knows.  Neuro #2 sure didn't see any reason to tell me anything.

Where are the doctors who WANT to listen to their patients?  I would like to meet one someday.

Chrisy

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634733 tn?1316629592
You asked for brief - so here it is:

My problems with doctors and neuros are in My Story in my journal.

In my neck of the woods we have 2 neuros - one is so arrogant it's untrue and the other is lovely but hopeless and semi retired (I have not met the latter and this is heresay)

I have been pre-menopusal and menopausal for 20 years apparently

Oh and I forgot the stress, depression, poor diet, overweight, lack of sunshine, lack of exercise, workaholic, hypochondriac, neurotic female syndrome too!!!!

If I hadn't found you guys I would have been locked up for my own good by now I'm sure of it.

Pat
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611606 tn?1315521367
Hi There, I came across this OLD Post of yours but feel it hasn't become Outdated at all.
As you know I haven't had any thing nice to say about any of the Neuros I have seen in the past 23 years. Sorry to say as of this date that hasn't changed.
I did see one decent one back in 1995, but once I was no longer able to stand riding in a car19997 I had to change to a Doctor in town, needless to say HE WAS FIRED after going to him for six months ( I wanted to give him a fair chance) He was like all the others that I fired... I was treated like a #... he was disgusted with me because nothing he tried worked, he said " I think you enjoy being this way" That was the Last Straw! I knew I was right all a long..HE WAS CRAZY!!! I fired him on the spot, told him I wouldn't be making any more appointments.  This was around the time my bladder started giving me a lot of problems, he kept saying it was my age, nothing to do with the MS. I knew he was Wrong. I was 53 and I was also getting the feelings of my tush being shocked with a live wire every time I rode in a car. Yes! He seriously said, it was because of my age, and NOT THE MS! How Stupid did he think I was.
I am so grateful that Dr. Patel had the sense to send me to a GOOD Urologist who knew about MS effecting the bladder and Dr. Yamada was willing to take me on.It's hard to believe we have been together for almost ten years.
This is why I'll never go to another Neurologist.. They just haven't been worth my time or the effort I have to make to get to my Doctors. It was a Neurosurgeon who made the DX of MS when he saw my MRI. I bet a Neurologist would have missed it.
I might sound bitter, and on this subject I am..... I have experienced to many bad ones, and after reading how many others have had to suffer because of a Bad Neurologist it makes my blood boil...
Sorry for the RANT, but I sure feel better ;-)
{{{{~!~}}}}
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I will also jump in and add to the discussion.

YES I have had very poor experience with neurologists and have been very angry...to the point that I never went back to them. Even my MOM has been angry at one of them.

The first neuro that I saw was during my first hospitalization. My mom was there and he was very concerned and told me that it was probable MS. He said that even though the MRI is clear right now...it probably won't stay that way. He stated on my discharge report "Clinical MS."
But then I saw him for my follow-up after I left the hospital. He spent five minutes with me saying that nothing was different and we'd repeat the MRIs ever couple years. I asked what could be done about my symptoms and he just wanted to prescribe me an anti-depressant despite the fact that I told him I didn't want one and wasn't depressed.
He wasn't all that bad...but that 5 minute visit in his office really bothered me. I was rushed out and had no plan of action.

Neuro #2 was absolutely terrible. My PCP thought possible seizures after a blackout spell I had and couldn't remember (my mom found me unconscious and unresponsive). I had an EEG (which he read and discussed the results with my PCP) and it was "abnormal" and I was started on anti-seizure meds and told I couldn't drive. Well...almost a month later I finally met with the man for the first time. Mom went with me...as I couldn't drive per his orders. He said it was just abnormal...not indicative of seizures. So he was going to repeat the EEG (the first was sleep-deprived and the second was not...so comparing them was kinda stupid). He completely dismissed all my questions about my MS symptoms and provided no explanations or suggestions.
My follow-up appointment with him was even worse. He continued to dismiss me and did not even seem interested in discussing it. He seemed to just rush through the neuro exam and didn't really pay attention to anything I said. *I* had to ask him for the repeat MRI. He was just going to do it of my brain and *I* had to ask him to do my c-spine. And he *refused* to do my L-spine. As I was scheduling the MRI...I told them that I needed all my records as I would be going to another neuro.

Then came the part that made me even more mad. Reading through his notes...I was absolutely LIVID. Even though several of the neuro exams were clearly abnormal...he listed everything as normal. He stated that my pupils were equal size...yet it's CLEAR to look at them and see that they're not (anyone could see this). He also stated "normal" results for tests that he never even did. I have had a lot of problems with lack of sensation. Well...all he did was tap his fingers on each side of my face and asked if it felt the same on both sides. I said "I don't know...I think so?" because when it's dull it's really hard to tell. And that's all he did. But in his notes he stated that it was normal to "light touch, pinprick, vibratory, and position sense" Yet he didn't even do pinprick or anything! He LIED on my health records and it just makes me SO mad.

I'm preparing to meet with Neuro #3 and I really hope for a better experience.
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Count me in. First neuro in Navy stated tests were false positive. I was sent to the shrink world. This first neuro dismissed cognitive, balance, sensory, and loss of taste sensations as a shrink issue and/or panic episodes. He didn't include them in his report. All my LPs back then were positive for Obands. I have never had a negative LP for O-bands

The VA never followed up on it. They did give me a VEP once, it was negative and said no further testing necessary, I didn't have MS.  Regarded first Navy neuro's statement as gospel. The never followed up on brain images or LPs although I had repeatedly asked for the LP so they could compare to the Navy tests. This is documented by the way. More psych visits although the history of physical issues would still occur.

Third neuro told me to go enjoy life although my equilibrium issues, headaches and sensory issues were coming on strong then. He did weak MRIs and said nothing there and that migraines were causing the questionable images seen on the weak MRIs. He wanted to know if I had ever had a head trauma. Maybe in high school I think, so he decided that was the cause of whatever he saw in the images. Suggested I take up yoga and that my problem was soft tissue injury and depression.

Fourth neuro wasn't much better. His thoughts were I had CFS or fibro and migraines and couldn't handle stress very well. I told him about the Navy and O-bands and stuff and he dismissed that. But he did opt for a MRI of my brain due to the chronic fatigue I was having. I said if the MRI shows something then can we do the LP to see if I still have the CSF inflammation. He agreed although I don't think he thought the MRI was going to show anything because he said as much. Well, it did show something and he kept his word and had the LP ordered. And sure enough, O-bands >5.  Second MRIs at 1.0T returned "demyelinating disease". He called me at home a month later suggesting DMDs. I opted for a second opinion, he agreed, and off to the VA in LA to a MS clinic I was sent.

Saw two neuro's there. One said my issue was migraines, this was a younger doctor. He couldn't listen to anything I was saying as his mind was made up, YOU HAVE MIGRAINES!  Neither of them had the O-Band report - go figure that is why I was sent there!.  But I had them, hand carried the paperwork. After the physical and history intake I showed the older neuro the Navy LP results for O-bands and the latest one. That ended that visit.  He said that is not normal and we need to get another set of MRIs over time, run more tests to rule other things and find out what is causing the CSF inflammation. The younger neuro got in my face on my way out and was still trying to force the issue that my problem was migraines!  I don't see him anymore.

Then in May, the older neuro sent me DMD literature to study to choose one and said it is a good to idea to start one due to he was almost positive I have RRMS.

Then in June, his office called and said they wanted another LP because the other one was false! Sound familiar? This is the same BS the Navy neuro pulled. Of course it wasn't negative. We finally got that corrected and now he wants another set of MRIs.  More excuses and more tests.  To the back burner of the VA system I've been placed again.

This older neuro in LA has said at times he thinks I have benign MS, then RRMS, then tests are negative when they are positive. Now, he says if there are no new lesions, or changes then that means I may not MS and they don't need to treat me. From what I have researched and read on this forum that is plain nonsense.

With that in mind, I sent a request to my local neuro and his boss to have these next set of MRIs at 3T. If they really and truly want to get to the bottom of my issue, diagnosis me and provide treatment then they should not have a problem with the 3T. Why the heck keep doing .7 and 1.0T series with regards to my particular situation and trying to make a diagnosis. Otherwise, it looks like to me and others, they don't want to diagnose it.

I've come away from some of these visits with enough anger that is crippling, often times just plain humiliated and at a total loss. The only way not to feel humiliated is to stand your ground and get mad, but at the VA that is not a wise thing to do. You'd be surprised what they write in those records. Feeling ignored? One doctor here just typed away every time I saw him, did half arse physicals and made smart arse statements that due to I was born in a sterotypical slow southern state, I couldn't handle stress very well.  Then he said, you know the VA has spent considerable money on you and they aren't going to find anything wrong with you. This is just prior to the brain MRIs and LP. He doesn't make those statements anymore.

Almost all of them have implied that my symptoms were insignificant or stress-related or imagined! No wonder they never wanted to do those tests all these years. Now that they have and they are positive they are still covering someone's arse and leaving me out to dry in limbo land. That is my take, otherwise like Doc Q stated here once, if they can spend all these years telling you what isn't wrong with you they certainly could spend that time trying to get to a diagnosis and treatment plan.

I had to contact the VA and request them to explain why the VA wouldn't even put these test results in the history section of my record so doctors could see them. Sure they are on a computer system somewhere but if you don't know that and don't know where to look doctors won't see them. And they use that line a lot too, "I can't pull up your records"!

I know you asked for a short note, and I didn't do that, sorry.

There ya have it Doc Q.  



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645800 tn?1466864555
Same here over a 20 year span.

In 1989 all of my tests came back negitive so Dr. Dx was CFIDS.

in 1993 All tests were again negative so Dx was migrains (Was not having headaches of any kind). Was given migrain Rx which gave me severe migrain headaches.

in 2001 MRI showed brain atrophy  Dx was fibromialgia.

in 2006 Doctor said I could nbot have MS because I'm not a 35 y.o. female.

In 2008 3 doctors again told me the same thing about age and sex despite sx and exam indicated neuro problems.

Latest in current Neuro notes doctor states that I probably have had RRMS that has become SPMS.

Dennis
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410281 tn?1254232664
Wow!

I get so frustrated over my experiences and now feel guilty because there are so many worse ones out there.

My fave dismissal was "I'll do any tests you want but they will be inconclusive." He then proceeded to tell me to "suck it up." and "the pain filter in my brain doesn't work."

I have another appt with someone else (recommended by a forum member no less) on 8/12. I'm horribly nervous.

Keep fighting all.
Heather
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867582 tn?1311630997
Dear Quixotic1

My expericnec has been similar to yours!!  AFter being dismissed locally, I travelled a great distance only to be again dismissed at a highly esteemed institution.  Based on experience, in my opinion, neurologists:doctors as divorce attorneys:lawyers (they are, with few exceptions, a cut below).

Yesterday, though, I tried a new neuro recommended by my PCP's office.  She actually listened to me (because last week I was in the ER with stroke-like symptoms of blurred right eye vision, sudden extreme right-sided weakness, and mental fog).  Yesterday, she agreed I had lost muscle strength in my hip flexors and yesterday I had a positive Romberg and could not heel-to-toe at all.  She has ordered an MRI (because, of course, the estimed ER, like most other ERs, only uses CT scan for stroke-alert patients - what a JOKE - they are so unreliable for brain issues!).
Can't get an aswer about whether or not my surgical clips from my thyroidectomy are feromagnetic or not, but a radiologist said it doesn't matter at this point because after nine years, enough scar tissue would have formed to hold them in place during MRI).

So, am continuuing the fight for an answer.  Years of waiting is agonizing (as you know).  I am so thankfu that you are willing to speak out, as a physician, on how other MDs (neuros) are treating patients seeking answers.  Thank you for validating our concerns with your experience!!

Hugs!!

WAF
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1064552 tn?1322583358
When I spoke to my neurologist regarding my initial test results (they were not helpful test results), I asked her where to go next?  There was a silent pause.  I said, I'm still having problems, mobility, cogitive etc, and she said something like.. well, we could look at the cognitive problems.  Then I told her about my new eye symptom and she sounded enthused for the first time.  (I've only had one appointment so far.)

I understand that doctors are scientists.  I understand that most of the neurological symptoms that people have can be faked by someone who has researched the symptoms (muscle weakness, some tremors, cognitive function, etc).  The symptoms that can clearly be determined to exist and which can not be forced to exist are fairly small in number.  I understand that they feel like they need to be vigilant against people with psychiatric and addiction problems.  But I also am very aware that the neuro exams they provide are also subjective.  If you strip away all of the subjective and the things which are fake-able.  There isn't a whole lot left.  Even my elevated estrogen count could be faked by taking estrogen.

*However,* they also need to be cognizant of the fact that the human body and brain are enormously complicated and there are a lot of things that science does not yet understand about them.  In my opinion, dismissing symptoms as psychosomatic after 1-3 visits is lazy and unprofessional.  The research I have done indicates that a tremenous number of neurological problems cause wide-ranging non-specific symptoms and the causes are just as wide ranging.  There are a huge number of tests which can be run which typically aren't (for whatever reason -- maybe the doctor thinks its too rare or too expensive or they don't know about it or you have a credibility issue).

The only real luck I have had with doctors is to present evidence that is irrefutable.  For example, back in my 20's when I first sought diagnosis for intermittant swelling and pain in joints, my doctor said that my knees looked normal.  So, I brought my tape measure to every appointment and he kept track.  When he saw a 4" difference in size, he referred me to a neurologist.

I was having a lot of problems when my estrogen started going up.  Nausea on the first day of my period, discolored discharge, dizziness, emotional wonkyness (I am usually very even-tempered and calm).  I went to a PCP with a subspeciality in endocrinology who told me I was getting old and should expect changes (age 35), to a doctor who thought it was just depression and gave me prozac and xanax, and finally a friend figured out my symptoms (which by then, 3 years later were pretty extreme and included sweats and hot flashes and what not) were cycle related.  I told my third doctor I thought I had peri-menopause and she is the first doctor who ordered hormone testing.  My estrogen was 4X higher than normal.  No wonder I felt bad.  After a month or so of testosterone to bring my estrogen down, I was back to normal.  It's very annoying and disheartening to deal with people who aren't good at what they do or persistent in doing it.  If I did my job that way I wouldn't be employed long.

I am not expecting a lot from this attempt to get a diagnosis.  If my doctor suggests it's psychosomatic, I'm going to ask if she is going to refer me for psychological testing to rule that out.  

I actually prefer to spend little time concentrating on whatever this is.  I find dealing with doctors and disease annoying and would prefer to spend my time and efforts on things I get something out of.  I'm not sure how long I can make myself pursue diagnosis, but we'll see.

Jen
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432312 tn?1265648574
I called my neuro last year complaining of severe eye pain.  I have had optic neurosis and thought that it felt quite similar.  My eye balls them selves hurt and I had a headache that was in the center of my forehead.  (I had forgotten that I had gotten new glasses 2 weeks prior.)  The pain became so bad that I called his office and asked if there was anything I could take.  My previous doctor had specialized in headaches and had always given me very effective drug treatments.  My new Doctor I think has stock in nuerontin as this is his cure all for all ailments.  He upped my dose of neurontin predictably and it didn't help... so I called back and was given an anti inflamitory which also didn't help.

Then my ophthalmologist's office called to check on my new glasses.  They said because my exam and picking out glasses was 6 months apart from one and other... I told them about my eye pain and they had me come in... turns out that my prescription had changed drastically in that time period.  They ordered me more new glasses and the pain subsided.

About a month or so later I went in to see my neuro and I thought that this might be something he would want to hear about so I reported that the eye pain I had been experiencing was due to my glasses.  He looked right at me and said so your telling me that you bothered another doctor about this untill you got an answer you liked huh?

Bothered??  I was soooo pissed off... I guess he forgets that he works for me... how dare he??

My Neuro is the only doctor that I have ever had that acts like I should be grateful for any medical attention that I eventually get anywhere!
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704043 tn?1298060444
  I will try this again - lost my other message!!  WHOA!!  I  cant believe this!!! Just look at all of us that have been jerked around!!  My first nero  had this thing for reflexes and ran it as HARD as he could in my arch- he said - someone had told him he was cruel for doing that-  imagine - at the time i didnt know the numbness comes and goes with some.. Oh yeh he asked if i wanted ms!!  duh!!   How dunb can a so called specialts be??  well 5 yrs later or so i was told of the blessing i have.  But think of all of us, our quality of life would of been so much better for years if they would just tell us!!!  tick  was surely  ticked!!
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147426 tn?1317269232
That is a doctor that needs to be dumped!  I agree, what an outrageous and mean-spirited thing to say.  Also, Neurontin is not the end-all-and-be-all of meds for MS.  He sounds like an arrogant, shallow thinker with poor self-esteem.

There are wonderful docs (neurologists) out there.  You need one!

Q
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My evil neuro #1 - after only doing some basic blood tests and a brain MRI that he didn't even look at - told me that there was nothing wrong with me he could help - that I just needed a good psychiatrist. He said he wasn't going to "crack my brain open and do surgery." Of course I never suggested such a thing!

He even made note that I "surprisingly" had clonus in my left foot. Heck, I didn't even know what clonus was at that point.

After we had a mutatl parting of ways and I got copies of my records from him, I was in total shock at the number of mistakes in them. He told my rheumatologist that she may want to send me to a rheumatologist. I started wearing glasses and had to have them changed twice in four months because of problems with my right eye - yet he reported that I hadn't seen an eye doctor in years and that he suggested I do so. He said he was waiting on a report from an ENT that he never even sent me to. He even sent most of my records to a primary that I don't even see. The list could go on and on...

To say the least, my experience with this guy was very bad. I just hope I have better luck Tuesday with the MS specialist. I'm just glad my primary doesn't  think my problems are "all in my head."
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I've been at home with my special needs 5 year old for the last 2 years or so, for many reasons.  One being I was on the verge of getting fired anyway because I just didn't function well enough mentally & physically to do the job anymore.  Fall 08 I got too bad to deny it anymore, the extreme fatigue, leaden limbs, brain fog, and PAIN.  Spent a year on anti-depressants & a few months getting snapped around by the chiro.  Got worse, not better, and my doctor had the nerve to say I was like this because I was BORED being a mother at home, I was tired because "playing with kids makes me (the dr) tired & bored", that being around my child so much had dumbed down my brain, and depression about that was causing my pain!!  How's that to make you feel like sh*t?!  Insulting me as a mother, devaluing the far from boredom in caring for a child with medical  & behavioral disorders & acting like it was just LIFE!!  My new doc diagnosed the old one as "suffering from a severe lack of imagination" among other things!  YEAH< OK- being a MOM makes you sick!
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Thank you so much for your "How many of you..." discussion, you returned me my confidence! I am not an MS patient, but I bumped into your forum searching for "conversion disorder". I have a muscle disease - and, believe it or not, neuromuscular drs are no better than MS drs. Unlike many of you, I did have a diagnosis (a rare myopathy) for two years, then I got a rapid progression of muscle weakness in the arms over a year, had a temporary paralysis in one arm recently. First, saw specialists in myopathies - "yes, it is consistent with the diagnosis, go see the best expert in the US on your disease" - saw the guy, he did additional tests, and did not confirm the diagnosis...Guess what - now it is "possibly a conversion disorder", but nobody refers me to a psychiatrist even though I ask!  My neuro is unsure, advises me to go to Mayo Clinic first to rule out physical problems. But - once I mention this "conversion disorder" to any neurologist, I instantly become a walking anecdote, they either laugh at my symptoms, or feel offended because I bother them with such a fuss over nothing. I did not have any psychological issues before, but now, after all the humiliation I had, I do have issues - I don't have guts to go see any doctor anymore, even a dentist. I cry all the time remembering how they treated me after my "real" diagnosis was not confirmed. Everybody was just dying to show that my weakness was "give-way" or "effort was suboptimal". One neuro even made me counting aloud while trying to lift my arm, to "distract" me. I felt so broken and helpless, feeling such a nuts - and I am a scientist with Ph.D., working in physical science all my life, probably not less educated and trained in my field than those guys! Throughout my career, I have been always treated with such a respect by my collegues, but when I see a neurologist, I am treated like a schoolkid trying to get an excuse from school. Thanks again, I am feeling much more like myself now; always been an optimist, but these people just broke me down.  
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1218873 tn?1300094816
Although undx I do not feel my neuro falls into the dismissive catagory but while looking at the MSsociety site in the UK I came across this posting and thought it was disgrace full here is the link:-

http://www.mssociety.org.uk/applications/discussion/view.rm?post_id=930482&id=14320

Hope that works only I didn't want to cut and paste as names are mentioned.

It made me thank my lucky stars that my neuro is still trying to find the answer to my problems.
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400099 tn?1282958464
I had my first major symptom at about 27 in 1984. My doctor told me to stop smoking and it would go away (my legs didn't work for about 5 hours). Then in 94 I kept waking up with my midrif numb and the doctor suspected MS right away, and he ordered mri..clear. He told me he knew something was wrong and checked pressure points for fms. I had 12 out of 19. So I was rather lucky that I had that to hold onto. The first doc who dismissed me? He teaches now in MA and I found his email. When I was dx'd in 2007 (yes, it took me 23 years to get an MS dx) I wrote him a long email about how he failed me and made me feel small and told him if he was going to teach medical students to please teach them to listen to their patients and not make assumptions. Geeeee...wonder why he didn't write back. LOL


My neuro who dx'd me? He's a wonderful gentle man and I love him. When I first saw him he didn't think it could be ms since I was 52 until he saw the mri results.Because I have several autoimmune deseases he sent me to CCF for a consult. I wasn't crazy about the guy, but he was polite and attentive...he recommended a drug trial to my neuro.  I said to my neuro, 'MS won't kill me so why should I test a drug that could?" He smiled and said, "You have a very good point there."

Perhaps I was blessed with this neuro because I did not mention MS at all. I just asked him to please help me find out what was wrong.
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Oh, count me in too!  Even my current neuro (who is incredibly thorough and careful and seems wonderfully smart) is cold and completely unemotional - I mean, I think he's pretty great at dealing with neurology, but you can forget hearing anything like "that sounds hard" or "congratulations on graduating from college"!  He interrupts and stares blankly at me during appointments.  I'm currently trying to figure out if I ought to dump him over this...  I mean, I know I'm going for his neuro expertise, not his sunny personality, you know - but yikes, talking about the ways my nervous system is failing is super scary; I could use a little babying - and appointments with him just feel kind of... cruel, I guess!  You bet I cry after them.  This is even when he ISN'T telling me to go see a shrink.

I had a Christmas Eve appointment with another neurologist a couple years back.  He said to me, "What is so wrong with your life that you have to come up with all these symptoms?"  Merry Christmas to you!  Ugh.  

Thanks for asking the question!  I think one of the BEST things about this board is how is shows us that we're not alone in our horrible experiences with doctors.  I'm so grateful for that, and for everybody who has shared their stories!  It just makes me feel so much better to know I'm not alone.
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897447 tn?1242239587
I've been told by different doctors (never by my pcp) 'it's in your head', 'you're a hypochondriac', you're a junky looking for pills' before my fibro dx in '04. never mind I didn't have any medical problems until after my ex attacked (5/2000) me and my upper and lower spine and my right shoulder took a direct hit/blow.
I would tell the doctor, just tell me what's wrong with me.

I started noticing a slight heat intolerance in '08, but blamed fibro even though it didn't make since. my ms-like sx struck hard in jan '09. my pcp believes me, for that I'm very greatful. a lot of doctors now blame the fibro, ignoring the fact my kinda-new sx don't fit. for example, I saw my dentist last month for a cleaning. I asked about tingling and pain I feel on the right side of my face and sometimes teeth. She blamed the fibro.

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897447 tn?1242239587
forgot to mention my PCP is doubting my fibro dx
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199882 tn?1310188142
Where do I start... Without looking I honestly can't say for sure how many neuro's I have actually seen including a MS specialist at the Mayo Clinic. I think it's been 6 or 7 of them now.

I've been called crazy, lazy, a hypochondriac, depressed, attention seeker, a drug seeker, and that's just to name a few of them. I've been "diagnosed" with Lou Gehrig's Disease, Carpel Tunnel, and my favorite a Paranoid Schizophrenia... What???

My Primary Care Physician actually diagnosed me with MS from the start but all of the so called specialist seemed more interested in proving him wrong than trying to find out what was wrong with me...

I have been laughed at and completely humiliated at times but my family and I knew something was wrong and we decided early on that we wouldn't stop until we found someone that would give us an answer... It didn't have to be MS but we needed a good explanation for what was going on with me...

I would love to send each and every one of these doctors my current records and diagnosis along with a letter telling them what I thought of them.  I'm a better person that that so I wouldn't do it but dreaming of doing it makes me feel good inside...hahaha

Quix, I have never thought you where to hard on the neuro's out there and if anything your not hard enough.  I think all of these post pretty much proves that theory...

Any way I just wanted to throw my 2 cents worth out there...So now I think I will go have myself a weenie roast and throw each of their names in the fire...hahaha

I'll be praying,
Carol
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>>Recently someone challenged me that people aren't dismissed, disdained, discarded or humiliated by neurologists as often as I seem to imply.

and now after all these posts what do these people think about their challenge to you?

i would add to my story above but there isn't any use. you know the story and have seen docs to validate it.

now  i'm in anger management over it and soon to be (some form of ptsd) therapy over it.  and those two things are directly linked to the dismissed, disdained, discarded, humiliation from the world of "getting to the bottom of my illness from the VA".

to be fair: some VAs are heaven and some certainly are not. for those that are good, please keep up the good works.
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956292 tn?1334058469
Hi,

I'm in limbo but my neuro is labeling my 20 lesions as migraine and old age..(I'm 41)

I have been experiencing symptoms since last June and he insists on theory..All my MRI reports have statements concerning MS and that it sould be included in diagnosis...all consistent with demyelination and gliosis...

How do you have a migraine when the symptoms that last since June and don't go away when the migraine does...And as far as migraines I am lucky if I get one every 3-4 months at this point....

He has weened me off migraine meds to see what I am like w/out them...despite a sinus infection which I beleive gave me a headache...I have not had any..

I am on the wait and see list...

JibJen
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704043 tn?1298060444
Mercy-  well  you should ask how  many had a good neuro    to start  with- lol
  wonder if there was  ONE-
  I know its old post   but  me  to   it  was like-  you  dont want  m.s,  do  you-- duh
and  are  you on street  drugs???
  its  really  sad  what  most of us  went  through-
     tick
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776614 tn?1265826354
Hi... First let me apologize because I can't follow & focus on all the posts, but really want to know what everbody has been through with horrible neuros & drs in general. I was DXd last Sept but have had symptoms for ten years. My story is to long to try to recap & some of the reason for my not being DXd sooner is probaly my fault since I only went to the Drs when I had to bc of no insurance... But I have been told I had umpteen different things thru the years with no one even mentioning MS since a neuro dismissed it in 2002. Now the MS specialist I'm seeing is wonderful but cant understand how it had been missed for so long. He says for my age, 29, I have pretty much the most severe case he has ever seen with all my test results being thru the roof??? This probly makes no sense but hope its not too bad :~) Hope everbody has a great day & weekend!!!

Melanie
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My first relapse was so odd that I didn't even think of going to a neuro. Metal taste in my mouth and slow moving pain that ended in my eye. After many doctors I gave up when symptoms got better. With my second relapse, numb from the waist down, I was told it was anxiety and they tested for diabetes. I went to my PCP on a Tuesday who referred me to a neurologist. I called on Wednesday and lucked out and they had a cancellation and could fit me in that day. I saw him and after a physical exam he ordered an MRI and scheduled a follow-up on his next available day, a Monday. I had the MRI on Thursday and the results were rushed. My Neuro called that same day and rescheduled my appointment for Friday, his day off. I went to my appointment and he clearly came in at 8:00 on his day off, he was wearing golf clothes to give me my diagnosis. I love my Neuro, but his PA always seems to downplay what I am feeling and without my awesome DR I would be lost. Part of the reason I worry about mis-diagnosis is because it was relatively easy to be diagnosed.
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572651 tn?1333939396
All, I'm playing catchup today and checking through lots of posts - this one had me pause and spend lots of time reading and rereading your posts.

There are a number of new things listed here and I hope everyone who wants/needs a reply to their post will start a new one, separate from this.  Many times we skip over something that was started this long ago; May 2008 was 3 months before MS had even been mentioned to me! So please, please start a new thread if you want to get a response to your specific comments.

That said, I just want to say reading all of this makes me want to run screaming from the room.  Even if you are suffering CD or other mental issues, and I'm not saying any of you are, the patient  deserves humane treatment.  Telling a person they are crazy and then showing them the door is not working to heal that person's problems, it is compounding the illness but adding on more problems.  

This is all so wrong - I wish you all luck in connecting with the right doctor for you.   I am in the same situation as lissalou wtih a dx that seemed impossibly simple - so much so that often I stop and wonder if it is the right dx for my situation.  

Wishing all of you better days and doctors,  Lulu  

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152264 tn?1280358257
To Kot1972: You wrote, "I don't have guts to go see any doctor anymore, even a dentist. ... these people just broke me down.   "

I can sure identify with that. Well, I was OK going to my dentist, because I'd known him a long time, but I developed a block against seeing doctors of any kind that was hard to get around, even doctors unrelated to my neuro symptoms. They broke me down, too--they really did. I had a very difficult few years. That was when I learned what depression was (iatrogenic depression!!).

I eventually became hypersensitive to any remark that was dismissive of my symptoms; for example, when I told a nice-as-pie new gynecologist about my daily flu-like achiness (she'd asked why I take OTC painkillers daily), she said, "So, aches and pains then..." and that made me so angry, as if having daily achiness in your arms and legs is normal. So I never wanted to talk to her again.

It once took me MONTHS to get up the courage to go to my (old) PCP and ask about a bleeding spot on my back. Her remark (when I'd told her that I'd been suspected of MS) was "MS? You don't want to have THAT!" and never asked me a thing about it again.

For a really long time I didn't see ANY doctors. I finally got up the courage to go see my old podiatrist when my ankle tendon got worse and was causing me a lot of pain. I debated with myself for weeks or months: is he going to pooh-pooh it and think I'm a hypochondriac? But if I don't go see him, is this just going to get worse until I need surgery on it?

After I finally saw him (and he didn't make any awful remarks), I slowly got up the courage to do other things, such as be seen for longtime postmenopausal bleeding and take another stab at figuring out my dizziness with the ENT. But every time, I went through weeks or months of agonizing before calling for an appointment.

Finally, when I got a new PCP who takes me seriously--mirabile dictu!!--I even finally took his advice to see a neurologist again, after 6 years. (It didn't do any good--I didn't even get a new MRI, and the neuro was a pretty clueless type--but at least I wasn't any worse off!)

I was never OVERTLY belittled, humiliated, or told my symptoms were all in my head (I think one reason is that I have one severe, measurable, non-fakeable symptom--a sudden hearing loss), but I clearly got the message, from a number of different doctors (from PCPs as much as neuros), that my symptoms were not important, not connected, not severe, not meaningful, not indicative of disease, etc. and I should just forget about them. Sure... if THEY had Lhermitte's, hearing loss, daily dizziness, paresthesias, bilateral trigeminal neuralgia, trouble walking, etc. THEY could just forget about those symptoms and be confident they were meaningless.

All I can say is, hang in there. Forget about the unhelpful and dismissive doctors, hang on to any good one you find, and just manage your life as best you can. That includes insisting on being TREATED for symptoms that are significantly affecting your life, even if they can't diagnose you. Hopefully you have a good PCP, at least. It was like heaven when I finally found one, after going through four duds.

As far as seeing other doctors (I'm sure not going to give you any advice about neuros!!!), just rehearse what you're going to ask them. Describe one clear problem that you need relief from. They want to know what they can DO for you, so don't tell them your whole story if you can avoid it; just focus on one thing. I think that's why my PCP has taken me seriously; I didn't even tell him about my neuro symptoms for the first year, only asking him to continue my prescriptions and refer me for a hearing-aid implant. HE was the one who eventually started asking questions. It made a huge difference in how he looked at me, I think. (Or maybe he's just a great doctor.)

In the end it didn't make any difference to diagnosis (or lack thereof), but it made a HUGE difference in my psychological health. I felt like a great burden was lifted from me when I realized I'd found a PCP that would LISTEN to me in an open-minded and serious way, so that even if no one could (or would) solve the neuro mystery, at least I could go and ask someone about other things if needed.

If *I* can luck out and find one good doctor, ANYBODY can. Hang in there!

Nancy (no diagnosis after 11 years)
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I'm in limbo but here it goes.

Neuro: "It's never possible to rule out MS but it's unlikely given your MRI and symptoms." (Dismissive, referred to PT)

Ophthamologist: "It can take years to establish a diagnosis of MS." (Derisive, further testing)

Neurorthopedist (sports medicine): "At your age [60], MS is very rare." (Dismissive and let's move forward on your back problems)

The only physician taking me seriously enough to refer me for an MRI of my cervical spine is an ENT, though he too recommends physical therapy in the absence of diagnosis.
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I am sitting here trying to type with one eye closed and my ears acting like they are stopped up or something. I am on prednisone for the 2nd time in two weeks and my symtoms are lessening a lot.


On Jan 3rd I had an episode of vomiting, tinnitis and eye blurriness.  I work in a hospital so I was taken to the ER where I was given meds and sent for an Cat scan.  The hospital has a stroke accredited ER.  

CT came out ok which was a relief because I immediately thought I might be having a stroke when this happened.  Next day went to a ENT who did many tests and thought Meniere's.  Wen't to neuro, had MRI, think brain only, it came back normal.  Neuro says he suspects
Bipolar disease.  I have ADHD diagnosed 17 years ago....Who knows,  I feel stupid.
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I need some names of some doctors.    That will take this seriously.  My General physician is as frustrated as I am.  They saw lesion on my cord and very small one on my brain and still won't help. They just want to watch..mean while I keep getting worse
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5112396 tn?1378021583
If you start a new post (the orange "post a question" button at the top of this screen) with some information (where you live, for example) there may be some people in your area who can suggest good clinics or hospitals. Here at the bottom of a very old thread, it's not likely that many people will find you to address the questions you have.
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352007 tn?1372861481
Old thread....but such a good one.

Too bad the people who suffered mental anguish and emotional turmoil over this treatment by doctors could not be compensated.  We'd all be rich.

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