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987762 tn?1331027953

Im back from seeing the neurologist - Guess what?

Hey Guys and dolls,

I just got back from seeing the neurologist, he wasn't who i thought he was which i'd worked out yesterday, same name but different guy, so not the MS guy i thought him to be, the neurologist I saw runs a memory clinic and use to work in the same department as the other neuro i'd seen. Still is a fellow in research but genetics and the only research i could connect him to was one on Huntington's disease, a bit disappointing he wasn't who i thought him to be, oh well these things happen.

I'll describe what happened and then ask for your opinion on what you think his conclusion was!

He had a copy of the one and only MRI without contrast (note dh mentioned no contrast and he said it didn't matter) that i've had, had the report though not the films, this is what it says:

Clinical notes: 5 years of jerky spasticity of the legs (note this should of read 3 months). concern regarding multiple sclerosis. Many Atypical features but no hard signs. Unsustained clonus. Exclude demyelination.

Technique: standard non contrast MR demyelination protocol
Findings: Multi focal deep white matter T2 hyperintese foci are disproportionate to the patients age and consistent with mild chronic small vessel ischaemic disease. Mucosal thickening of the paranasai sinuses with mucus retention cysts of both maxillary antra, left greater than right. No other abnormal findings.

Conclusion: MR findings consistent with mild chronic small vessel ischaemic disease.

After reading this he took a brief family history, he refused the symptoms list and time line i'd written, stating he preferred to get answers to his own questions which is more accurate than reading a list written by the patient. He only wanted me to tell him about "big things" because he said the little things are not really relevant. I tried to tell him things but he kept redirecting, he didn't want to hear anything unless it was in direct response to his question. He mentioned my tremor, when i was telling him about it he cut me off and said he'd taken a full history and he needed to start the testing. So he had written down that i'd collapsed in 03 and that i'd seen a neurologist in 09.

He had me walk down the hallway, back and forth about 5 times, not fun, the bounce was having a ball, right leg lifting too high like it does and i was getting more jerky the longer i walked, i was wishing i'd picked a better pair of shoes lol. On my last treck he ordered me to stop and close my eyes, i did and promptly fell forward (i so did not expect that), he keeps ordering me to stand up, which i did very aquaurdly(sp) with nothing to help, when i get to my feet i promptly fell backwards onto my butt (and i didn't expect that either).

He gets me to take my shoes off and asks me if i had a psychological condition, I told him that i'd seen a psychologist and there was nothing wrong with my mental health, he stated that "you cant always believe it, a psychologist doesn't always see a psychological condition!" He had me sit on the bed and close my eyes where i again promptly fell backwards. He tested my eyes with the light, checked my tracking, now dh said he was surprised at how well my eyes tracked, which is odd because to me my eyes felt like they were rolling up to the left and i had to keep bringing them back.

He had me lay down and asked if i'd ever been on anti depressants? Errr no??? He commented how the tremor is better when i lay down, and i told him that it always calms down if i get off my legs. He ran a sharp on my feet to check my feeling, yep it was sharp, he noted my purple feet. Got me to tell him he was pushing my big toe(s) up or down, not a problem there. He bopped my wrists, elbows, the ankles did a little ripple, then moved on to holding my left leg at the knee, knee bent and pushed from the bottom of my foot. This set it off jerking, he checked again and it still jerked, he did the same to the right and it did it also, though to me it didn't feel as uncomfortable.

He went back to the left leg and tried again, same result, he then started telling me to stop pushing his hand back, something i didn't know i was doing because the jerking was doing my head in, the more he did it the worse it felt and the more he kept telling me not to push back, seriously i wasn't!!!!! He kept checking both legs, even had me lift my arms and click finger, still happened the same, tried getting me to count backwards by 4's from 100. I did this whilst he's sending my leg in to the jerky ripples, lol i got stuck on saying 50, couldn't find the number 52 but he said it didn't matter. I was knackered, my legs zingging and wiped out, they still did their little dance every time and it didn't matter what else i was doing.

He checked my blood pressure whilst laying down then had me stand up and did it again, he said it was just as it should be, higher when your standing. I put my shoes back on and he told me what he thought...................

So Guys and dolls what do you think he said???

JJ







20 Responses
Avatar universal
ARGHHHHHHHHH!!!  Hang on - I'll explain my argh in a minute....still reading your post....ok first  thing I think is "what a f***wit* if he didn't LOOK at your MRI scans. (did he? did I miss that bit?)

I think that because my MRI reports contradict what the scans actually show, according to my current neuro. MY reports say, "no lesions on corpus callosum" but the neuro said, ahem, look here, and showed me . Also my reports say ?small vessel disease, atypical for demyelination. Whereas my neuro says bollocks to that.

Ok, I'll bet he said

MIGRAINE

?
Avatar universal
Or depression - "It's all in your head". ???? Oh the suspense! TELL!
1396846 tn?1332459510
Not sure how he can say the MRI without contrast doesnt' matter, because it does.

Him blowing off your list of symptoms with a detailed timeline is ridiculous too. And he only wrote down your collapse in 03 and that you seen a neuro in09. I don't know what he is doing? Inless it is that he wants to see for himself first hand. My neuro wanted to know everything that I had been going through. He does blow off some of the things but he listens.

And for the psycological condition. If you were cleared by a psyciatrist for psycological issues then who is he to second guess that. That is the purpose of these tests, to rule out other problems. How would he like it if another doctor said the same about him, "well not all nuerologists can see a neurological disorder?" WTH

It does however, seem like he did a pretty extensive exam, except for him telling you not to push when you weren't, but guess he had to be sure.

Do you have a follow up with him? did he order any more tests? Did he explain why your feet are purple?

I hope things get figured out for you soon and that he takes you seriously and runs more tests to get to the bottom of this.

Hugs,
Paula
987762 tn?1331027953
COMMUNITY LEADER
Jemm my girl, patients is a virtue, interesting that you had small vessel disease too, was it by any chance also in the deep white matter of your brain? I think my MRI was abnormal after all. You didnt miss it, he didn't look at the scans because he didn't have them.

Hey hey Paula, he was more thorough than the first neuro, i forgot he had me push against his hands whilst my legs were bent up, i was but he kept repeating it and telling me to use all my strength, i was but he'd used it all up already lol. 8 hours later and my legs are still killing me, i'll answer your q's soon if i do it now i'll give it away to soon.

Cheers....JJ
Avatar universal
Jesus Janice tell us!

Mand
1386048 tn?1281012333
wow, he sounds like he was so dismissive of so many things, but on the other hand, he saw lots of evidence--plenty to show him this was not all in your head.  

if he wound up telling you nothing was wrong, i can't begin to understand his motive.  it is just way easier for them to dismiss hard cases out the door and hope that they land into someone else's pile?  

i also want to hear the end of your story....i could see him going either way, but one would hope with all of the jerking, falling etc...that he would believe what was in front of him and help you to find some answers as to what exactly is happening in your body.

i can't think of one psychological disease that would cause these symptoms, and how could you possibly pretend about these things??  

ugh...please tell us he took you seriously!!!!!!

hope those legs start to recover soon--not fair!

xoxo michelle
1386048 tn?1281012333
and furthermore, is it not rude to keep prodding someone about their psychological profile?  i mean, even to ask about it in the beginning i believe to be quite rude.  he could atleast see you two or three times before he jumps to this as a possibility.  my neuro did the same thing.  anxiety right off the bat!  i'd shown her no signs that i am aware of of anxiety, and as per your description of the appt., you were not behaving at all or in any way psycologically off.  it takes some nerve for all of these doc's just to assume that.  grrr!
1312898 tn?1314568133
Here is what I think:

FIRSTLY-----PERPETRATOR

What a pathetic, ridiculous, imbecile, incompetent, impersonal, degenerated, untrained person who is unworthy of you.  He is not redeemable as a physician and should be reported immediately to what ever licensing board in Aussi as well as the facility you saw him in.  You can give me the phone numbers and I will be happy to do it for you.  

What he did to you was abusive---VERY ABUSIVE!!!  He allowed you to fall multiple times and didn't offer to help you up.  That my dear is not only abusive but could have ended in catastrophe for you, broken bones, broken hip, head injury.  He needs to be resported immediately before he hurts others.  

He is a @#@##&&&*(((  and a &&&*%%^$.  

What a waste he is as a person.  He had no compassion for you.  The way he treated you is a horrible disgrace.  

He thinks he is better than a psychologist at diagnosing psych problems,  he thinks he is above listening to your history from you--he refuses to allow you to describe symptoms--he interuppts you and dismisses everything you said.  

He inferred that you were either lying or causing your own symptoms

This is an outrage!!!!!!!   This is horrible!!!!!

What in the world did the idiot say!!   He should be disciplined by the medical board---allowing you to fall!!!!!!!!!!

What did he say?

Red------------
987762 tn?1331027953
COMMUNITY LEADER
OK Ok i'll tell you even though i might punch out the monitor whilst i'm doing it lol.

He sat down and said "you do not have a neurological disease!"

DH and I were both stunned, i said sorry i'm confused isn't the brain creating the tremor, i thought that was neurological. His response was "it can be caused by numerous things, even i can make my hand shake" i kid you not!!! I said your talking about it being psychological, and he said "that isn't my area, in my 30 year experience i believe you dont have a neurological condition."

I said i'm still confused, psychological would not be responsible for all the problems i have even if that was true, what about my engorged veins, what about my cognitive changes. His response was that "he didn't want to hear about my veins, and IQ is subjective" he then said "I cant give you a neurological condition" so I told him I wasn't asking for one, all i wanted to know was what was causing me ALL these problems. He said "when i first saw you walk you reminded me of someone who walked just like you, but you didn't have the signs she had, I suppose it could be a rare neurological condition or even genetic"

I'm thinking get me out of hear before i loose my cool and scream!!!!!

He then said "we could reschedule another MRI to see if there are any changes, we could do an MRA and see if anything shows up. Did you have any blood tests?" I said nothing since last year and that was looking for an infection. He then asked about an EEG, envocated something or other which was also no and no. Then asked me to schedule another appointment in 2 weeks so we could discuss this further. I paid the bill and left.

So what did he say, 1) I dont have a neurological condition 2) he never said it but he sure left a huge bread trail pointing to psychological 3) It could be something rare (bollox) 4) it could be genetic isn't that what he's interested in and low and behold most of my family are Asperger and or bipolar. 5) Come back in a couple of weeks and I'll send you for more tests to prove i'm right or maybe wrong. Thats my understanding anyway!

I only lost control and cried after dh, which at the moment does not stand for dear hubby, screamed his head of at me for saying the neuro dissmissed me, and didn't believe i fell over unintentionally or that i wasn't making my muscles spasm all over the place. Because the neuro never actually said he thought i had a psychological condition DH is angry i was over analysing the appointment. I was not in a possition to cope with him screaming at me, so i asked him why from the start did he not want to know any and i mean any of my symptoms and why did he keep asking questions about mental health, why did he not want to know about the cognitive issues you and I both know i have now, if he did believe me why would a neurologist not want to hear brain related information!

DH said just because he doesn't think its neurological dosn't mean he thinks there is nothing wrong with your brain, I was gob smacked here he is thinking a neurologist just deals with nerves sygnals in your body, not a specialist of the brain. Once i told him he appologised, swore his head off some more then said but we already know there is nothing psychologically wrong with you, no one who knows you would believe that. He also said there was no way your making your muscles do what they do, i can hardly hold you up.

He bench presses over 100kilos, he's a strong guy and when he holds my arm, the tremor ripples through him and no matter how hard he tenses and fights it, both his and my arm still moves at the strength of my tremor. This action will go on, none stop for hours, i'd like to know how its possible for someone my size and strength to over power a strong guy like dh.

I'll stop now

JJ
  
198419 tn?1360242356
I wanna know, I wanna know, I wanna know...

I totally can't guess. But, the exam did sound pretty thorough. Though some of it sounded extremely frustrating. And, I can see where he'd not want the list. The list is good for us to have though as a patient.

Sounds to me he wanted to draw his own conclusions from the responses you provided. An independent conclusion. This I understand too - just imagining what it must be for a doc to get hit w/a lot of what we think is going on, or some prior professionals determination of cause, etc.

looking forward to hearing ...the rest of the story.....

-shell
1253197 tn?1331209110
"****####*%%***}}[email protected]@@"  (Have not quite got the hand of swearing without using the right letters)

Words fail me.......except to say that you dear girl deserve better than this.

Love and hugs

Sarah
1312898 tn?1314568133
Oh God, JJ,  I am sooooooo sorry.  You were treated incredibly cruel.  You weren't even treated with any sense of humanity.  And I am so disappointed in you dh for not defending you when you were being drawn and quartered.  Where was he?  Your husband didn't care enough to defend you?

This guy should not be allowed to see any more patients.  This goes beyond abuse, I just don't know what to say.  The level of cruelty is staggering.  The level of ineptitude is even more staggering.  

come back in a couple weeks?   Why not order the tests and then schedule you with a real neurologist?  What does he think will change in 2 weeks?

This so called doctor had decided your case before he even saw you.  You never had a chance ever.  From the beginning of the appointment---you never had a chance


I am soooo sorry .  I wish there was something I could do!!!!

(((((Hugs)))))XXXXXXXXXXX

Red
1396846 tn?1332459510
OMG, I can't believe that he talked to you like that. You need to see another neuro and report this one as Red reccommended. No one deserves to be treated this way.

Why the HE** didn't he order the tests on this visit, why wait another 2 weeks to run tests that he is going to order anyway.

You are better than me, I would have went off on his [email protected]@ right there. I would have made him eat his darn words.

I am so sorry you went through this, then to have to deal with your dh is too much to handle.


I really do wish you the best and hope you find a new neuro that will take you serious.

HUGGGSSSS,
Paula
198419 tn?1360242356
OMG! My post crissed crossed yours!

I take back what I said to this docs credit and thorough! He was just going through the drill not actually acknowledging ANYTHING he saw or discovered!

Why ask you back if it's not neurological! I'm so sorry, JJ. Truly I am. No one should be left without a plan of pursuit or be belittled in the way you were.

He should of respected your knowledge and experiences.

I'm so sorry.
-shell
1386048 tn?1281012333
ugh.  huge horrible words to that man.  it really makes no sense to me how this can happen, and so frequently it would seem, to so many people who are actually suffering!!??

i echo everything everyone has said here and am so sorry for your experience.

i still am a fan of your dh though...he has treated you so well through all of this, i still remember your story of him waking you up with a kiss to tell you you were on your way to the doc's office...someone who was goign to take your seriously.

can you go back to that doc now and ask their opinion of what to do next?

it is so odd to be discounted like that--i'm furious for you!!

xoxoxox michell3e
987762 tn?1331027953
COMMUNITY LEADER
Hugs to all!!

I didn't have an issue with him wanting to ask his own questions, and seeing it (me) for himself, but i did have an issue with the questions he asked. There was no telling him about anything i experience now or in the past, i tried to mention the sensory issues and he flat out said he didn't want to hear any of that. His questions were mainly yes or no responses eg Did you get hospitalised in 03 (me) yes, that was it, he told me he didn't want to hear the details each time i tried to provide something.

Just before i left, i told him i didnt think he would be able to really understand the what, when and why of what i'm dealing with, when he didnt ask any questions about what i am actually experiencing, you can not know when you didn't ask! He said he'd take a copy for the file, I asked him to at least read it before filing it away. It was straightforward no conclusions, just generic headings and examples.

I didn't even have a problem with him asking all the questions about my mental health because well i have nothing to hide because there isn't anything, and i've already explored and excluded that, I think he should know that titbit of info. I still stupidly didnt have a clue what he was going to say, i didn't actually think about what he might be thinking, i was just trying to do what he asked of me.

I am intersted to know if your legs are suppose to go into spasm, bouncing in a bigger ripple as it travels up your leg, not stoping until he straightened the leg. Which is what mine did when he did that test, it was a horrible feeling like being tasered (though ive not been tasered lol) he did it multiple times in a row and even when i grabed my thigh because i couldnt stand it sometimes, the lower half was still in spasm.

is that normal and do me a favour, try faking it cause i'd really like to know how it could be even possible. oh btw i couldnt feel anything but the spasm, then the after affects of tingling I didnt even know if and where his hands were holding me, it was instant and though i cant say painful, it felt really really horrible!

I am gutted!!

JJ

Its now 2am, id better try and get some sleep, night and thanks for giving a $^@^ i feel rather discarded!
1312898 tn?1314568133
Eviscerated!
147426 tn?1317265632
My analysis of this [email protected]'s behavior is simple.   He has lost all concept of human compassion or of the nature of his profession.  He was abusive, cruel and incredibly mean-spirited - clearly a sadist.  This kind of behavior should be reported to authorities as he will continue to indulge his appetite for causing harm and distress.  I suspect he is a misogynist of the highest order, though he may treat men like this also.

He had decided that you were faking your problems either before or with his first glance of you.  His "thoroughness" in taking a history was poorly disguised bias.  Like a legal cross-examination he guided the questions and your answers to prevent even the tiniest bit of evidence to creep in that might refute his prejudice.  He didn't want to hear the real story.  He only wanted to confirm, in his own mind, the diagnosis he had made so hastily.

His exam was abusive so as to be negligent and cruel.  If he let you fall, that would rise to the level of negligent harm in this country.  Repeatedly accusing you of faking your reactions shows his appetite for causing distress.

the fact that he put you through all of this and then inquired about your "work up" is ludicrous.  If he truly had any curiosity these questions would have preceded the exam.

I agree that if more testing is warranted it should be ordered at this visit, not at some future date.

Do you have a good relationship with your GP?  If so, this should be discussed with him/her immediately.  I would have you print out what you wrote here to place the experience in writing and submit it to your doctor.  Personally, I would not see any one who treated me like this again.

Can you discuss with your hubby how he viewed the appointment or has he harbored some doubt of your symptoms all along?

I'm sorry you have been degraded and humiliated like this.  It is hard to essentially be accused of faking symptoms to get attention.  I hope you can separate yourself from the reprehensible behavior of a sadistic sociopath.  Please don't give him any more power than he has already tried to grab.  Seriously consider filing a complaint - though I don't know how this works in your system.  I wouldn't be surprised if there aren't other complaints in his file already.

Deep in your heart you know the truth.  This "specialist" is not your only option.

Try not to dwell on the treatment you just received.  

Quix
649926 tn?1297657780
JJ,

  WOW! What a tool. I have had doctors say and and hint that it was all in my head as I'm sure that many of us here have but they were just stupid. Your guy was mean!

Of course now you have to go back and see what he says and that is going to be hard. I'm curious to know if you and DH - since he did become dear husband again by the end of your story - have any kind of plan for when you go back. ?

Maybe DH should be more vocal next time if he is comfortable with that. Could be that this doctor and his ego would respond better to a man.

Sorry you were put through that [email protected] nobody deserves that and especially when they have so much else to cope with.

Keep us posted
Hugs,
Erin :)
987762 tn?1331027953
COMMUNITY LEADER
Well there is nothing like the validation of your FRIENDS who know and understand on a level others could never dream or wish to tread!

Funny but the GP (general practioner) was adiment that it was ALL neurological!! What sent dh into a tail spin was my insistance that i would not be attending another apointment with that underline 'that' neurologist. Because I dabble in psychology, i only say dabble because with out a degree what i know is not relivant as anything more than a hobby, the one reason i was going back to uni was to consolidate my knowledge with that little piece of paper but my brain had other ideas. DH thinks i'm still too smart for my own good, if i was ignorant i'd be fine, you know ignorance is bliss, which is why dh didn't even know what a neurologist did.

DH didn't have a clue how I was feeling, to him falling over was something the neuro needed to see, because thats what he told him when dh reacted, bolting out of his seat to catch me though he was too far away but his reaction was automatic. The neuro told him to do nothing but sit there, dont help her at all, so he did nothing through out the hole thing. The only time he spoke was in response to the neuro asking him how he was doing, note he didn't ask me how i was doing.

The one thing i am very sure of is the belief dh has in what i'm dealing with is real, he has felt the power of the individual muscle spasms, in places you just can NOT flex. He has seen my eyes roll into my head after looking up, seen the shock on my face as i topple over backwards because my eyes closed during a sneeze. He sees and feels the strength of the tremor, getting stonger with time, not weaker, i am visibly weaker but the tremor or muscle spasm is stronger. My veins bulging and the list goes on.

What he wants is for me to be wrong, no MS no disease that he cant do anything to fix, his anger out bursts are always misdirected, i know he's not really angry with me, i do not take it personally because i know he has a problem though i think me telling him how I felt about him insisting i return to 'that' neurologist was a shock.

I have said i will go back to see the GP, if for nothing else but to get help with the spasms and vein engorgemnt. If a muscle relaxer helps calm the muscle spasms so i can walk and no longer live with the pain of it, if a blood thinner helps settle down the veins, then i can live with the rest, i will be better off with just getting help for those two things. I dont want to ask for anything but i know he is the type of dr who will try and find the alternative answer.

Cheers..........JJ

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