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147426 tn?1317265632

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.

Quix
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352007 tn?1372857881
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.

Helpful - 0
5112396 tn?1378017983
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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152264 tn?1280354657
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)
Helpful - 0
572651 tn?1530999357
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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Avatar universal
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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776614 tn?1265822754
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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704043 tn?1298056844
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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956292 tn?1334054869
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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Avatar universal
>>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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199882 tn?1310184542
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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897447 tn?1242235987
forgot to mention my PCP is doubting my fibro dx
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897447 tn?1242235987
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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Avatar universal
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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400099 tn?1282954864
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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1218873 tn?1300091216
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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147426 tn?1317265632
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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704043 tn?1298056844
  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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432312 tn?1265644974
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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