Neuro appt a bust

I had my appt today. He said, and I quote, "I don't think this is MS." He doesn't know what it is. He says my reflexes are asymmetrically hyper up and down. He confirmed that the finding of a t3 myelopathy from two different machines with two different readers can't be artifact. But that's all he could do.

Except...there was a kicker. He said, "Oh, but since we've been looking for things for two years and haven't found anything" (oh, except for that myelopathy--or "focal insult consistent with demyelination" in my tspine--except for that, of course), we have to think also of other things." He elaborated that I should have a neuropsych evaluation and then said that in his conversation with Big Neuro 2--the one who dictated his report that was so different from what he told my husband and me during the appt--that Big Neuro 2 had mentioned a concern that I was "magnifying symptoms." I don't know how Big Neuro 2 could have concluded that since the worst thing he reported finding for me was some mild right-sided weakness up and down. There were no other major findings, so I'm not sure what exactly I could have magnified there.

So, yes...even though I have OBJECTIVE findings of a spinal syndrome of some kind...I'm still being accused of having some of it be in my head.

The fun part? I KNEW when we left the Big Neuro 2 appt that he thought that, and here's why: When Bg Neuro 2 first started questioning me, I used the word "neurogenic" to describe some pain I was having. He interrupted me and said, "Words can be funny things..." and I knew at that moment that he suspected me of spending too much time learning fancy words and looking things up on the Web, and he was biased against me from then on. Never mind that I (1) have a PhD in biology and significant biomedical postdoctoral experience, (2) have taught university-level anatomy and physiology, genetics, and graduate biomedical science classes, (3) edit medical research papers FOR A LIVING, having just two weeks ago edited a review on cervical myelopathy, of all things; and (4) have just completed writing a biology textbook to be published in a few months. Yep. If you use the word "neurogenic" or act like you know too much...you're magnifying symptoms.

I'm angry about it, no question. But I also confirmed with my neurologist that I DO NOT need surgery of any kind, so that is a weight (again) off my mind. The rest of it? Time will tell...it has already told me a lot, so I can wait some more. I am, as I told this neuro a year ago, a pretty patient woman. Time will tell, as it seems an upper t-spine myelopathy and clear symptoms of a spinal myelopathy syndrome do not. I don't think I'm going to do the neuropsych evaluation as all of this doctoring around has already made me almost crazy. I won't be seeing another neurologist for at least a year, so that gives me considerable time to think about it. I'm at much greater peace when I'm not in the midst of seeing these people.

Bio

[shoshin]

Wow! That's horrible. Where are the doctors who open their eyes and ears, actually think about things, and are interested in looking for real answers? No one on here seems to be able to find one recently.

I'm glad you don't need surgery, anyway.

sho

[Udkas]

How frustrating, annoying and disappointing. Gee, it seems like the neuro's when they can't find answers like to blame it on our mental state. Grrrrr

We should do a poll and see how many people here were told they were suffering from anxiety, somatic illnesses etc. before they eventually had a diagnosis, I am sure there would be plenty.  I know these things do sometimes exist but I think also neuro's use it as an easy answer.  How bleeping annoying and upsetting for you.

I am too pleased that you don't have to have surgery.  When I go to my neuro I always try to describe the symptoms I am having but not use the correct medical terminology I try to let him decide if it is neuralgia pain or Lhermettes etc. It seems that if you use correct words, which you have every right to do so Bio that you are victimized for being so educated, but we need to be educated to keep our doctors on the ball.

I wish I could post my neuro your way as he is nothing but kind and willing to keep trying and testing and looking for a diagnosis but these type seem far and few between.

Thinking of you,
Udkas

[biowham]

Thanks, Sho and Udkas. Udkas, I also got your note, which I appreciated.

The most frustrating thing is that I have objective signs of a myelopathy that you can't fake--the asymmetric reflexes up and down, some EMG findings) and even imaging results of an ACTUAL MYELOPATHY on my upper tspine--and they STILL feel the need to pull out the crazy-woman card.

Geez.

Bio

[Cat081957]

Totally understand :)........I was sent to a neuropsychologist for shaking symptoms that I experienced back in 2008. Turned out I was pretty normal from all the tests he did but the shaking symptoms went away even before I saw this guy...so never did find out for sure what it was.

[Udkas]

I have hyper reflexia, positive babinskis and ankle clonus and few other things on examination (like I can't do heel to toe) but my MRI of everything is PERFECT and my neuro still insists that it's not crazy woman, not anxiety, he tells me every appointment that my examination is abnormal and that there has to be lesions in my spinal cord that the machine is not seeing?

He is watching me, monitoring me, doing whatever testing he can perform and he keeps telling me that what I describe is real and corresponds with what he finds.  

Now your neuro is finding things on exam but blaming this on crazy woman things that is crazy, your abnormal findings should be evidence that there is something wrong.  Wish I could send my neuro over for a visit as he doesn't fob you off.  See you have actual evidence ( I don't) myelopathy on your T spine must account for something.

Geez I feel your frustration!!!!!!  Wish I could help.
Is there any other good neuro's that you could go to.  I travel to another city to see mine but he is worth it.

I feel angry for you.
Udkas

[Deb61]

Your doctor is LAZY.  He can't even go to the trouble of looking up your past findings when pulling out the crazy card.  I think Udkas is right--there's lots of us that have had something similar happen prior to our diagnosis.

It's no picnic suffering like this only to have someone ignore your past findings, cleaning out your pocketbook, and then telling you that you're exaggerating your symptoms or making it up.  It's much like getting robbed, kicked in the teeth, and spit on after you've been suffering from an illness for years just because you're brighter than the doctor that's treating you.

This really stinks, Bio.
Deb

[Quixotic1]

It stinketh majorly!.

This guy's brain made a run for it and his stand-in brain (the one that keeps his skull from collapsing) is on break.

I am so sorry.  

"It's no picnic suffering like this only to have someone ignore your past findings, cleaning out your pocketbook, and then telling you that you're exaggerating your symptoms or making it up.  It's much like getting robbed, kicked in the teeth, and spit on after you've been suffering from an illness for years just because you're brighter than the doctor that's treating you."  Deb, you stated it so well!

Quix

[HVAC]

May be its time for still another neurologist?

Alex

[Lulu54]

Huh?






All that blank space is me being at a loss for words here.  This is so wrong on so many levels and you know all the particulars.  I'm sorry you have been subjected to this.

I'll bring the marshmallows for Friday night's roast.
Lulu

[lovemy6monkeys]

((hugs)) first and foremost. Second, want me to poke him in the eye with a fork?

[tonyad]

  It seems that there is such a trend in this Right?
Look at how many on this forum lately has been told this same s**t...or even WORSE,
Have their diagnosis taken away? (HUH? I still do't see how this can happen!)

  So should all of us be concerned that if we go to see our Neuro on one of his "Pissy" (Male - Macho) days, that we may have our dx taken away or that we have nothing more than the "Crazy Woman" Syndrome!!!
Any thoughts?  I'm Ranting I know but this is Soooo unfair as we all know!!

       Well, perhaps we do have a bit of a case of the "Crazy Woman Syndrome"............. caused by these dipstick doctors!  
Scenario;
       They inform us at the begining of our MANY visits and MAny MANY Dollars Later, that we "Probably have MS", or that "This is looking more and more like MS".............Ahhhh, a bit of mental relief comes to us, Hopes get up...Yes, there is Something wrong w/ me I knew it!   Next visit comes......BAM!
Well never mind the doctor procceed's (i think I spelled that wrong :) to tell us, you do not have MS, nothing on MRI or not enough of what I WANT TO SEE (Lesion counter), you are stressed and female...Thanks for the money....And Oh Ya, No need to make a follow up appointment! Makes us a bit crazy and confused...Ya think??

When does it end?  or Where does it end?
~Tonya

[Sailorsong]

This trend of the D.U.M.B and S.T.U.P.I.D. doctors make me wonder if there is a class action suit agaist this class of doctors is in the works. It has to be bordering very close to malpractice and torture.

Every time I hear one of these stories (or I experience another one for myself) I can't help thinking of the doctor I saw many years ago that wanted me to under go shock therapy because of my symptoms.

Dennis

[mistylee]

Yep .......another crazy here....according to my last 2nd opinion neuro.

Really would like someone to do a poll on how many of us have had the somataform dx thrown our way!!

I'll help with the roasting on friday night Lulu!!!!  I will bring the wine!! Maybe if we all dance around the bonfire , half cut, in the moon light we really will look like crazy women lol!!

Sorry you also had to go through this Bio....know exactley how your feeling.

{{{{hugs}}}}

Mistylee

[rendean]

I agree with Deb61! Great summary!

I was sent for 2  neuropsych exams since "I spoke the language" due to my profession. It cleared any doubt both times and verified the deficits in executive function. It doesn't help with a diagnosis but it certainly gives the ego  and the "I told you so" a big lift.

Knowing the jargon is a hindrance most of the time and it is hard to  dumb it down it down at times. THAT'S when I'm faking it.  No faking the loss of executive function. No faking the numbness and tingling. No faking the non-stop vertigo, no faking the frequent, random falls.

The clean bill of health from 2 neuro-pysch was so refreshing to hear. I am so sorry to hear of this latest inept doctor. You ARE a most patient person, better than I am.  Today was an injustice and I do think you got the shaft .

Sorry your appointment was such a disappoint.!

Best wishes for finding a neuro with a backbone,
Ren

[supermum_ms]

I started to read your post and then couldn't stop laughing, each line was more rediculas than the next, i'm not sure it could of got any worse. I think i've now heard everything, your too educated, does that mean 'real' symptoms are automatically null and void if you do speak the lingo or gasp have a degree? I wonder how that works, as your handed your degree, pesky little mylopathy takes residence in your spine, love to see the reseach study on educated people having more imagined yet real sx of disease. I wonder does MS only happen if your NOT educated, its just all so D.U.M.B.

Just so you get i'm with you, i realised a long time ago, that educated people are not necessarily smart people. Now a gifted educated person is hard to come by but a women who is gifted and educated is a rare bread indeed, well that pearl of wisdom ususally comes out of the mouth of a man, sorry guys!

I've been gifted ALL my life, i'm educated though i did it differently than most because i was the sole carer of my mum and brother. I had no issues doing the neuro-psych exam, i was interested because i knew i was not what i was a year ago, cognitive skills very much affected, i wanted to know by how much. Shock horror i'm no longer gifted, duh i thought that already but its another thing to see it in writing, I was more shocked that the (male) neuro-psych doubted I was ever gifted because i didn't go straight to uni after school. Yes apparently gifted people dont have a life that would interupt their education or have economic issues or homelessness. My eyes are rolling, a young educated twit!

It does get better or worse depending how you want to look at it. In this neuo-psych's opinion (after my female gifted psychologist set him straight on my gifted status), that  i have lost over 2 standard deviations but because my assessment still fits into the normal range he had no idea what if anything it could mean. Um young educated twit, does that not mean i've got brain damage and it might be worth finding the cause.

So overall i have evidence of a damaged brain, clinical signs of lesions and my neuro adult educated twit sent a letter to my GP that doesn't mention any of the evidence but indicates i could have anxiety or depression, he didn't even bother to wait for the psych reports that proves he's full of hot air and doesn't know his arse from his elbow!

Lets do a poll, i know your not alone with having the misfortune of meeting up with a dud of a neuro, its too common and so freeking wrong!

Cheers........JJ

[steph74]

Bio,  I'm not sure what I can add here.  You're doctor clearly did you wrong.  :(  

I also have a PhD, though not in biology, but I've always been interested in medicine and the body.  I read a lot and understand what I read.  But, unfortunately, I've learned with some doctors (not all) I have to play down what I know and understand.  This breed of doctor takes you more seriously when they think you don't understand anything.

Funny thing, one doctor I *didn't* have to do this with was the neuropsych (PhD, not MD) I saw for my neurocognitive testing.  She was great and really respectful.  If you can get a good recommendation for a neuropsych, it might be worth doing the evaluation just to check the box.

I understand what you mean about being more calm when you're not in the midst of testing and seeing doctors.  I feel like doctor's appointments get me more concerned about what's going on and why they can't dx it.  

Stephanie

[Lulu54]

I just took my 87 y/o mother to a neuro for a consult yesterday.  I will put up a separate thread on her visit.

About half way through his hour long exam, he paused and asked her if she had a medical background.  I thought that was interesting because she had not said anything too technical - she was just talking about all of her various symptoms in lay terms.  

The question just didn't fit, and I had to wonder why he asked.  He told her she sounded very educated about medicine and she pointed out her age, the fact that she had five children, and has seen quite a bit in her lifetime.  BTW, my mom is a high school grad and went to secretarial school for a year.  No higher education, but lots of life experiences.



Is there a general paranoia amongst neuros that we know too much?

-Lu

[biowham]

Thanks to everyone for the supportive comments. They help me more than you can know.

Lu...I think you're right on. As a friend of mine put it, they don't like it when you peer behind the Great Oz's curtain.

Bio

[biowham]

Meaning to add, this neuro also said, and I quote, "Everyone has spots on their brains." And I said, "You have these even when you're 40, 41?" And he said, "Yes."

Bio

[PastorDan]

Oh, Lu, I think you hit the nail on the head with a great big hammer that time, and Bio's friend put a good label on it.

Someone correct me if i'm mistaken, but aren't neurologists and psychiatrists certified by the same board?  Maybe they wish they were one instead of the other.  Maybe there's more money and less risk in psychiatry than neurology.  Maybe somebody should smack their fingers with a ruler once in a while.

Incidentally, the neuropsych eval, as ren and Stephanie suggest, was a vindication of sorts.  It dealt much more with intellectual functions than emotional.  The good professor found that the specifics in which I was lacking were obviously attributable to a disease process in the white matter.  Unfortunately, he said it was up to the neuro(s) to figure out what that meant.  Consistent with JJ's history, he also hinted that, since I qualified for Mensa 24 years ago by the skin of my teeth, I'd probably fail by as much today if I were to have to be retested to qualify.  (Moot point, since I decided in the second year it wasnt worth the dues to me.)

[PastorDan]

Oh, Bio, this guy's another I'd like to have call me, like the toad we roasted last week.  Still waiting for the phone to ring.

[Nancy T]

Honestly? I think they use "magnifying symptoms" (and its many variations--hypervigilant, functional overlay, etc.) when they don't want you to come back. It's their way of getting rid of patients.

They've decided (rightly or wrongly) that they can't or don't want to diagnose you; they have therefore lost interest and don't want to spend any more time with you. Now it remains only to deliberately make the patient angry, confused, or disgusted enough to not call back.

I hate to ascribe motives to people when I don't know their motives for sure. But in the absence of any reasonable explanations from doctors about why they do this, I cannot figure out any other reason why this practice of blaming the patient--REGARDLESS of abnormal physical findings--would be so very widespread among neurologists (and other doctors, too).

I had a dream last night in which I followed a doctor to his office for an appointment, he promising me intently that we were going to get to the bottom of things. I started following him up a dizzying kind of metal staircase suspended from a high ceiling, at first doing well despite the swaying and the increasingly difficult handholds and footholds. But eventually there were no footholds, and I was unable to pull myself up solely with my not-so-strong arms. He then started insulting me. Does that sound familiar to anyone?

Truly, I would like to ask a neurologist or two to openly explain to us WHY they do this (tell us something's wrong, then essentially tell us, for no good reason, that we're hypochondriacs). I cannot imagine how they could honestly and reasonably justify that practice.

I'm sure there are more than a few doctors who don't like uppity (i.e., well-educated) women and feel it necessary to find nasty ways to put them in their place, but that can't explain how prevalent the blame-the-patient trick is.

As for having looked for two years and not found anything (except, of course, for the things they found), the very smart head of a balance-testing center who answers questions on a dizziness list I've read for years always says about testing: "Just because you don't find your keys on the kitchen table doesn't mean they're not in the house."

[amers789]

Hi Bio, I am so sorry for the jerk you had to put up with. I know how you feel for I too was told that all tests for screening today were negative and he says well that's it, no answers. I guess I was lucky compared to you since he did not tell me to get a neuro psych evaluation. I know the fact that you are well educated is always a hindrance. I am a nurse and somehow they don't like being told what we have or are experiencing. Please private message me and let me know who that neuro was, remember I messaged you that I too live in Austin and I definitely will not go to him. Anyone who is rude to say it's all in your head is a total ...blank...blank..blank..fill in the blanks all with any appropriate adjectives. Take care and hang in there...someone will find an answer for you...Amy

[LATW]

We must be seeing the same neuro!! I had a simular thing happen to me a couple of weeks ago.  It is just awful.

Now I am gathering records to see another neuro.  I sure feel sorry for you.  

I actually have/had a diagnosis but now I have no clue what is going to happen.

LA

[saveone]

I don't know what I can add but I did want to say welcome to the club.  I am on my fouth neuro.  I have been told by two of them it is all in my head.  One even said that because of my previous marriage and my stressful occupation I had fried my brain....lol.  That is what he said.

I have had one neuropsych eval...it stated I had problems with more areas than I care to mention and that it was consistent with white brain matter disease :0) I am now scheduled Mar 30 for my second.  Go figure.  

I still have no answers and I too have learned it does not pay to appear intelligent.  One Phd psychologist told me they were the ba stard children of the medical field and not to act like I knew to much and not to offer more than they asked for or they would say I was crazy.  His words not mine.

Your neuro is a jerk...move on .  You are smart and you know something is not right.

terry

[cassrox]

I'm starting to think this D.U.M.B and S.T.U.P.I.D thing is an epidemic!