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1312898 tn?1314568133

The Neurologist Giveth and Taketh Away Your DiagNonsense


I had my second visit with my MS Specialist today.  We were supposed to go over some test results and figure out a tx. Plan such as PT etc.

She came in saying “I have good news”, “it turns out that you actually don’t have MS”.  I said “WHAT ARE YOU TALKING ABOUT”  

She says that “the new LP done there at the university came up negative.  I said “HOW COULD TWO LP’S BE COMPLETELY OPPOSITE.  My first one, done somewhere else had O-bands and a high Igg Index.  She said  “well you don’t have o bands or a high index on this LP now so --------------we don’t know what the other lab did wrong”.  

I said, “You have to be kidding me, you can’t use the first test result to help you meet the McDonald criteria that you are worried about”?  She echoed again that they must have done something wrong.  

Then she starts in with the evoked potentials, she said “the VEP and BAER are within normal limits but the SSEP was abnornal".  I said “I’m not surprised as it was nearly impossible to elicit any electric signal from my right foot”.  She said “oh no, no that had to have been an error on the techs part and probably the machine too—so we just took that as an error and threw’.  I said, “You gotta be kidding me.  There was nothing wrong with the machine for the other potentials, so how could it be off on the other side of my body??

I told her, “I come in here, you do a clinical exam and find hyperreflexia, hyporeflexia, ataxia, babinski and hoffmans, a slight nystagmus and you throw it out?”  Well because now you have a negative LP and we can’t use your SSEP you have to have 9 lesions”  

I asked her “why do you bow down to an MRI when a clinical exam was once the gold standard?  Well I wasn’t a doctor then she said.

You send me in for a new MRI, see some spots and say they are from something else.  I told her that I had had enough, going to doctors asking for help while I keep getting worse.  She said “well, you can come back in 6 months and we will redo the MRI, then you come see me”  I said:  “OK, lets wait---for what--- maybe by next time I will be in a wheelchair”.  She says well I’m trying to help you.  

She says “You need to go back to your general practice neurologist because you may have a different neurological disease.”  which one?

She offers a script for vitamin D.  I said I don’t want a script for that and won’t take it.  Why bother I said.  I came here for help and I leave with a vitamin?

I guess it doesn’t matter, if it is the PPMS she originally said there isn’t anything they can do anyway.

Every time I come back on this forum I am a mess.  So, I want to give up.

I feel like a complete total stupid idiot.  I feel shamed and humiliated.  I’m sorry.

Red
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867582 tn?1311627397
Dear Red,

Another suggestion:  Always keep a file of your own medical records.  You should have all the results of lab tests, consults, have CDs or films as well as detailed reports of diagnostic studies, etc.  You should have a copy of the results of both your LPs showing not just the physician conclusion but details re the fluid complete with the numbers.  Get these directly from the labs if possible.  Your university neuro's immediate conclusion and insistence that "that other facility" was the one that made a mistake on your LP findings really highlights her duplicity since that is not the scientific approach one would expect in a university setting.

It is amazing what I have found from examining my medical record.  Sometimes when the doctor says something is "normal" it really isn't (trend toward normalization)  and we should always review results of studies and also all reports consultants send to our primary physician to know the truth. For instance, I had long believed my cardiologist was speaking honestly to me when she told me my Holter monitor and echocardiograms were normal and unrevealing.  However, the report she sent to my primary physician, whose notes I have only recently read, said something different.  In brief, my Holter study, while largely normal, showed episodes of atrial fibrillation and ventricular tachycardia, and my echocardiogram showed features that caused her to label it a "mildly abnormal study."

Anyway, don't toss the detailed report from your first lumbar puncture because you could still use it to get your diagnosis (back). I would place my money on that first LP report as likely being more accurate than the university LP report.  Would you be willing to travel for another opinion?  I am aware of a neuro in another state who might possibly be able to help you get to the truth.

WAF

Helpful - 0
867582 tn?1311627397
Red,

I have experienced just what you describe at 2 university clinics I went to.  The only real focused attention I experienced in both places was when they were confirming my insurance numbers - which they did with perfection.  During my university clinic visits I felt like I was in the Twilight Zone - it was as bizarre for me as the experience you describe.  I'm telling you:  Don't go to any more university clinics for diagnosis. Don't!!

I started out trusting and positive:  It was my many bizarre experiences in pursuit of a diagnosis that caused me to arrive at my conclusion about why it is so hard for us older folke to get diagnosed.  Can't find any other explanation for the ludicrous behavior of otherwise intelligent physicians.

I wish I knew where to tell you to go.  Not sure if Canada would be better.  Canada is pretty tight with the US govt.  And, yes, doctors here might not accept the diagnosis, but at least you would know for sure.

You might attend some of your local MS support group meetings and find out from those already-diagnosed people if anyone is diagnosing older individuals in your area. Sometimes you can learn a lot in those settings.  If there are people there who were diagnosed at an advanced age, find out who helped them, get their MD's names and numbers.

Feels like we are in a carnival house of mirrors doesn't it?  Either that or quicksand.

Anyway, try to be hopeful.  Stay away from universities and self-proclaimed "MS clinics of excellence."  Attend local MS support groups.  Fire your current neuro.  Research success stories. Research spinal taps. Follow positive leads. Possibly research medical tourism abroad.  Pray about it.  We're in this together - you're not alone (although it can sure feel like you are at times) so keep posting here and maybe, one day you'll finally arrive at your true diagnosis!!!

I know that help can arrive when you least expect it- that is how it was for my son who for years went without a diagnosis despite presenting with classic textbook symptoms to numerous MDs.  Then, out of the blue, someone caring volunteered information leading to an incredible German physician, a doctor who was "out of the loop" - educated in a different country -  not behaving like all the other physicians my son had seen.  Bingo!  My son got diagnosed in one day.  It was that fast and that unexpected for us. And what a difference it made!

So keep the faith!! Stay strong. Believe that one day you will get your answer.

Meanwhile, it's nice to have you for company here in Limboland!

Hugs and minty chocolate chip ice cream to you!

WAF
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Avatar universal
Poor Red.....and gee the issue of universal health keeps appearing! It must be dreadfully frustrating to be american sometimew, when you have , no doubt, been told your entire life that yours is the "best system in the world" and other such bollocks.

Sadly Red, I do believe you have to be a citizen of the country to be able to freely untilize it, OR have a reciprocal agreement between the two countries. I don't think the US has reciprocal agreements with anyone.

On a lighter note (because we all need that), did anyone here enjoy that show "Flight of the Conchords"? Comedy about two Kiwi lads in NY.

Anyway, one episode is about one of the kiwis "rooting" an Australian girl (THE HORROR ) .Here's a clip with the aussie girl behaving in a very aussie manner, followed by a funny song (the whole show was really about the songs)  If anyone needs subtitles I will be happy to provide...

http://www.youtube.com/watch?v=1cGoDns8wTA

Hope that gives you  a laugh Red...
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1386048 tn?1281012333
lol about the root-ing thing!  i travelled once with a sweater that said "roots athletics", as roots canada is a clothing company that makes nice sweatshirts here, and i learned that definition rather quickly..."i'm an athletic"  teehee.

anyway red, come on up to canada!!!  i'll house you, but i just won't let you see my neurologist--we'll have to scout out a good one for ya!

xo michelle
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1168718 tn?1464983535
OMG, you sound almost like me.    It is the hardest thing to just sit there and feel like SH*t and they tell you that you can take a vitamin.  I think I would have jumped over the desk with my hands thinking of doing different things that shaking hers.  

I'm so sorry, I do know how you feel, I have been throuogh 5 neurologists and I think maybe this one might be ok.... but they all seem to be so afraid of this disease, though they are ready and willing to poke us, test us, and make us feel like we are mental..

Big hugs to you, and will be thinking about ya,
Candy

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667078 tn?1316000935
I had a to go through a few Neurologists before I found a fit. One would not even look at the tests. I went through half a dozen. With PPMS you may only have one brain lesion and a negative LP.

The reality is we have the most expensive medical system but the 36th best. My theory is the insurance makes the Doctors rush.

I had one Neurologist who I felt did not even recognize me even a couple weeks later. When I quit seeing him and got his notes I was right. Each time it was as if he was looking at a new person and coming to a new conclusion with exactly the same tests an evidence.

I went to local NMSS talks and picked out my MS Specialist from his presentations. He is great. It was hard to get in with him.

Alex
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1312898 tn?1314568133
I don't know what an MS Clinic is supposed to look like.  When I walked in on Tuesday, I thought I had lost my way.  It was full of children, babies and geriatric patients.  So I went to the desk and they said I was in the right place.  My first time there I was at 8:00 so there was no one else there.  

My experience was nothing short of an abusive 'Schizophrenic Process'.  There was no winning for me and there was no logic.  The only logic was that black was white and up was down.  It was what is considered a 'crazy making' experience.

One thing that I forgot to mention is that she continually interrupted me.  It was as if she knew what I was going to say and headed me off at the pass.   I would get half a thought out and she would start talking about the 9 lesions or some other excuse.

Weak and Falling;  All you said rings true.  The lack of physician patient empathy, and the complete disregard for the safety of a patient.  The level of her (and her colleagues)  contempt for patients was second only to the betrayal of the oath they swore to uphold.  

When I met her, she made a diagnosis based on the previous tests that I had brought to her, her clinical exam and patient history.  During that time she always talked in the singular "I".  At this last appointment it became "we".  We have decided you don't have MS, We believe that your first LP was an error. We believe that the SSEP was due to tech. and machine error.  

I feel so incredibly betrayed!!!   The incredible DISDAIN they have for their patients should be criminal.  

How do these people live with themselves?  How can they purposely cause hurt to a patient and call themselves doctors.  How can they practice medicine in such a cavalier fashion?

I wish I could go the the U.K. for diagnosis.  But when I came back home-----wouldn't it just be taken away again?  

I don't know how many of you saw the movie 'Sicko' that compared the American health system disaster against the U.K., France, Cuban and Canadian universal coverage systems. There was some footage of a french physician being interviewed about their system.  When asked about the American system, he stood up and said 'NEVER" and walked out of the interview.  

Everyone knows about our for profit health system here that is now based in managed care (profit) companies who don't mind causing deaths to Americans.  

This seems to be an American thing?  What can we do to make it change?  Where do we go when we have been shown the door?  What kind of power do we have?

THe only power I was left with was to say "NO" to her stupid vitamin thing.  She was then able to say "well, it's your choice".  Can you say female dog.  

Canada is very close since I am in Michigan.  Can I go there to be diagnosed?

Where does a person go from here?  It seems that we should have some power.  

arrrrgh  

Red
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867582 tn?1311627397
Dear Red,

I feel your pain and it is excruciating!  What an outrage!! I am so sorry for you (and you will have to pay her for that kind of "expertise"??)   However, on the other hand, I am not surprised at your neurologist's actions.  I have lots of experience with the medical trends in this country (especially in neurology) and one of the current trends among many neurologists is toward what I call "normalization."  In other words, doctors cancel out what the patient says about symptoms etc. by the skillful use of diagnostics. When red-flag results from labs or other diagnostics come back indicating a problem,  the neurologists simply discount them by saying, "not full patient effort (respiratory tests)," "likely lab error," "nonspecific finding," "suboptimal study", or they give the obvious meaning of the lab/diagnostic test result a new spin- i.e. misinterpret it - call it something else, or they may totally ignore those red-flag results, as if they don't even exist, all the while playing up any negative diagnostic findings and acting like they are all that count. That is what you experienced.  From what you described, your doctor was obviously posturing in her responses to you.  The trouble with us patients is that we don't want to give up our cherished and comforting belief that professionals in this country don't lie:  Wake up!  Corruption now permeates all strata of our society.  And when doctors lie, it can prolong our suffering and deny diagnosis.

I have found the worst examples of this at university clinics.  Lets face it, they do receive substantial funding from our govt. so if there is governmental pressure to reduce the number of neuro diagnoses (among people in 50s and 60s), it could be reflected in manipulation of grant money etc. Universities are definitely vulnerable to governmental influence and intervention.

I know popular opinion is that universities are great places for medical inquiry.  I have not found this to be true.  I do know that universities need patients so their students can have learning experiences (and that, I have found, is their main focus) so perhaps universities are the ones promoting themselves. My worst experiences have been at universities.  Let me give you an example.  I go to this pricey "expert" at a university to investigate the possibility of ALS.  That buffoon tells me that no one with ALS would ever complain of "fatigue, weakness, or balance problems."  For those of you who don't know about ALS, that would be like a cardiologist telling a patient that no one with heart disease would ever complain of chest pain, shortness of breath, or weakness.
The buffoon orders no tests. He says I have excellent balance.  He tells me to get a journal and write in it daily, "I am a strong woman."  That's good medicine?  I didn't for a moment think he believed what he was telling me. Nor did I believe he was as dumb as he sounded.

You people are way off track if you think neurologists know so little about MS that they are doing these things out of ignorance.  They know full well what they are doing:  It is just too obvious and they are not stupid.  

Red, the goal seems to be  (especially among people in 50s and 60s - before they have passed their maximum age for being able to get disability) to NOT diagnose with a neuro condition. Note:  The do-not-diagnose trend positively does not apply to cancer (which is so lucrative after diagnosis).  

I feel neurologists are somehow being pressured to delay or deny diagnosis to patients in their 50s and 60s (perhaps by a government not wanting to pay disability). I can picture incentives being given to not diagnose and possibly penalties for too many diagnoses.  Why else would neurologists be doing this?  I have seen just too many inexplicable, nonsensical absurdities such as what you experienced - I think we all have.  Your doctor seemed to be almost in a panic to reverse her earlier diagnostic conclusion about your condition.  Maybe she caught Hell from her departmental supervisor about giving you an MS diagnosis.  What I do NOT buy is the idea that neurologists are doing this out of stupidity or ignorance.  Does not compute!!

I do believe there are still some neurologists in this country who will honestly diagnose people in their 50s and 60s.  You likely won't find them in the university setting though.  Don't give up.  Find out from others (in your age group) who has diagnosed them.  Choose your neuros very, very carefully.  There is always the option of being evaluated outside the country.  

I share your pain!  Au courage!!  Hugs and best wishes for better experiences in the future,

WAF    

P.S.  A relative who had passed the maximum age of disability complained of neuro symptoms. I told him he'd likely get his diagnosis soon.  Within a month he was diagnosed with Parkinson.  
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1382889 tn?1505071193
  Red, the only stupid idiot you described was the neurologist!!  She is the one who should be ashamed and humiltiated over her treatment of you.  Kick her to the curb and quick!!

   I cannot for the life of me understand why some of these bozo's are so afraid to dx MS.  But they are.  Take this as a sign to move on to someone who actually knows what they are doing and use the test results accurately.

   Know that no matter what, we are all here for you.  We all have our ups and downs.  Right now you are in a down but we will do our best to lift you up girl.  Chin up and move on.  The road this puts you on may put you in a place that you need to be.

   Hugs, and kisses,  Julie


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Avatar universal
Yeah Quix.....rooting away down under has entirely different connotations .........I remember some joke about some blokes being like wombats:

"he eats roots and leaves"..........ho ho ho.

Standard pick up line in a pub after a few too many  beers is, "G'day, wanna root?"

Usually results in a slapped face.

Red, I hope you are feeling ok today...
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147426 tn?1317265632
My point for the last three years EXACTLY.

Q
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1253197 tn?1331209110
Just to add on to Pat's post (Postman Pat???!!)....my neuro has also said the same thing so this is obviously a UK thing. He said that although they obviously look at MRI's carefully particularly for dx, after that they are less interested. He said that the reason is that the number of lesions is not indicative of the degree of disability. he sees some patients wiht loads of lesions who have few mobility problems or other neurological difficulties and some who only have very few lesions but who are in a wheelchair,

He said that clinical history and listening carefully to the patient and their ongoing symptoms and changes is far more helpful. He is a good listener...and I have complete confidence in him.

More hugs, Sarah x
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634733 tn?1316625992
I am always late for any party or roasting around here but let me give you an insight into the thinking of my MS team. -

I asked my MS nurse if they were likely to do an MRI anytime soon as I hadn't had one since Dec 08, when I got my dx. Her reply was that they didn't place much weighting on MRIs as it was much better to listen to the patient and examine them!....................

wait for it not finished yet...................she followed this with,,,,,now if you were American, their neuros place a lot of emphasis on the MRI results and to track progress, but we don't believe it tells us much.

Okay, okay don't all shout at me together, and please don't shoot the messenger, it's just one opinion.

Point is Red everyone here has said what needs to be said - just get outa there and find a real neuro..........

(((hugs))) Pat x
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560501 tn?1383612740

   Hope you are feeling a bit better today :)

     I too hope that you can find another MS Neuro to go to that has more knowlege than this doctor.  Unfortunaltely No matter how much WE know and can recite the McDonald Criteria, Lesion counting, MRI worshipping, and so on..... that some of these neuro's, are not going to budge on what they believe!

     Then on the other hand, you have those who are ready to dx w/out proper protocol. I guess it's a catch 22 kind of thing.  You will find the right Neuro though who will be more attentive as to what is going on w/ you and that KNOWS about MS! Keep being your own Best advocate!

    Good Luck,
~Tonya
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1312898 tn?1314568133
Quix, thank you for reading this through and helping me see through all the pqoeimnf30tr8="q that was happening.  

It was the University of Michigan Ann Arbor, that's why I was blown away with the results.  It's disheartening.  

While I was sitting at the check out area I saw and grey woman type creature run behind me with great haste.  Now I realize that it had to be Dr. jip34i running from her office jumping over the children in the peds, and the seniors waiting for geriatrics.  \\\

It's odd that the office is peds/geriatric/ms.  I was the only person there with a walker.

My experience has been a continual decline for the past year with several times where I leveled out for 1-2 weeks.  That was whyy she said "definately progressive MS at the first time.  She said she was 95% that she was correct.  This was based on the information I gave her, MRI results, reports from other neuro, LP report,and her clinical exam.  

I will run, run, run from this debacle of a clinic that worships the almighty MRI.  

You have taught us well in regards to the retorts.  I actually had them on a word document that I call WAR.  It's there in case there is an exerience just like this one.

phew,  I'm exhuasted--going to bed

Red
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987762 tn?1671273328
COMMUNITY LEADER
Morning Red,

I've not posted because i'm totally gob smacked, it just doesnt make any sense, and i couldnt get my head around whats happened at all but thanks to Quix she's summed it up perfectly. (&**#$@%#$@$#) indeed!!!!

We lov ya babe!

JJ
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1421489 tn?1285525635
Hi Red,

I just wanted to send lots of hugs and prayers across the Atlantic. I really, really hope that your general neurologist can help you either get the answers you require, or refer you to another MS specialist who has a deeper understanding of MS in its various guises.

Take care,

Jep
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147426 tn?1317265632
I'm sorry I'm late to the party, but I have lots of righteous anger to contribute,  and I am glad I did.  Your colleagues here gave great answers and showed a high level of sophistication about the inaccuracies she tripped over.  These guys are GO
OD!

My reaction to your story???

I*(&*##%^(&)()+#!!#$^...............)*$@@%^^*)(+_)+)(*&*()(_...............roadkill..........weenie roast..................#$%($*^(@$(%%%*^}Q#E%#$%&

breath

First, I am so proud of you throwing her stupid mutterings back at her.  She knows so little about MS that you would be in real danger under her care.

Your neuro is so far lacking in any doctoring, reasoning, or treatment skills that you must escape from any grasp she might have.  The slimy gray thing skipped town just after she got her licence.  The reason you heard a faint echo in that room is that her calvarium is EMPTY!  What a nincompoop!  With the emphasis on POOP!  There was no way you could have been forewarned to her deficiencies by seeing the poor  escaped brain scurrying aimlessly in the halls of her office.  Nope!  It was long gone, I susect now enjoying Mai Tai's on some tropical beach.

Oh, where to begin???  When in doubt begin at the beginning.

What a dunderhead, dufus, ill-mannered, and unprofessional thing she did when she talked to you about a diagnosis of possible PPMS - knowing that the results of the repeat LP might change her friggen mind!  

Then she gets results that directly counter the results obtained by "the other lab".  this is a huge point.  And it does illustrate that some labs are incompetent in testing for O-Bands.  What does she do?  Well, immediately assumes that "her" lab is correct and the other lab, completely wrong.  That may be the case.  But, unless she knows for a fact that her lab runs the test correctly and the other lab doesn't, all she really knew is that one lab screwed up.

Is she at the University of Michigan?  Is that the lab that ran the tests?  In my heart I would want to believe that such a large center would know the erecommended protocol for testing for O-Bands.  Can you get both reports and find out which labs the tests were done at?

Tossing out one test result willy nilly is something that some doctors and some scientists do to make the evidence move into line with their own desired outcome.  It shows poor personal and professional integrity.

But, what about this "negative result?"  She had considered that you might have PPMS, correct?  Does she know, like I have known since I was diagnosed, that 40% of people with PPMS ARE NEGATIVE FOR O-BANDS IN THEIR LPS?????  That result should not have changed her mind about anything, except perhaps  perhaps to have swayed her TOWARD the diagnosis of PPMS.

But, does she read the MS literature?  Even if her assessment was that you have RRMS, she would know that the studies looking at O-Bands in people with MS show that the results range from 5% to 10% who don't have them.  There was a recently report of a team that went into an MS Clinic to recheck every one's diagnosis.  They found some that were misdiagnosed.  But, of the Definite MS patients, they found - using the correct protocol - that the number without O-Bands was 10%.  This was well into the disease.   Apparently your little numbskull  (and emptyskull) finds missing 1 in 10 an acceptable error.  Sheesh!  You ARE still distancing yourself from her, I hope.

Okay, onto the the SSEP.  It was a difficult test. But, they apparently got good info on one side.   However, a week ago - or whenever - she was willing to accept the finding and use it as evidence.  But, now with her New and Improved Diagnosis, a positive/abnormal SSEP doesn't fit.  So, again throwing integrity to the wind, we will disregard what was perfectly good evidence some days ago, because it doesn't fit our new theory.  

BUT!  What if we accept the SSEP as wrong???  Well, she should know, if she is ordering the test, that the SSEP is the least common of the evoked potential test to be positive in MS.  I would have to look, but I believe the percentage of MSers who test positive on it is under 50%.  So, it's another test that is helpful when it is positive, but when it is negative it offers no information AT ALL.

Now, that she has retreated into the haven of the deaf, dumb and blind she throws out that zinger of, "Well, now my hands are tied.  We have to wait until you have 9 (COUNT THEM, NINE!) brain lesions before you can qualify for a diagnosis.  Ha, ha, you lose!  Bye, Bye, Don't Cry!  I think I need a Mai Tai"

We have talked before about the Myth of the Nine Lesions.  This woman has no idea how to apply the McDonald Criteria.  I don't remember if you have had two or more attacks or more than a year of neurologic deterioration, but you list the abnormalities on exam.  Assymetrical hyperreflexia (spinal cord)- BINGO!  Babinski Lower Extremitis- well, could be the same lesion as the one causing the hyperreflexia, Ataxia (cerebellum) - BINGO !  Hoffman's - UPPER Extremities - BINGO!  Slight nystagmus???  - iffy.  You got two findings to qualify for the MCDonald's Criteria.  ANY CONSISTENT MRI LESIONS ARE ALL YOU NEED FOR DIAGNOSIS!  (If the mimics have been adequately ruled out)How come I can understand these and she hasn't a clue?  

No where in the Revised McDonald Criteria does it say that you need a postive LP, or VEP to gain a diagnosis of MS, though you need one of these for PPMS, I think.  The "9 Lesion Rule" doesn't apply to PPMS.

You qualify for Dissemination in Space.  If you have had two of your qualifying abnormalities on neuro exam happen spread out over more than 30 days then you qualify for Dissemination in Time.  That is enough to theoretically diagnose MS right there.  Okay, 99.9% of all neuros want to see some abnormality on MRI.  One is enough. Two is better.  Three is slightly better than two (giving you about a 90% chance of having MS is you have had a CIS - single attack), but, more than three doesn't help that much more.  Good data showing this.

Clearly she was sold on your MRI data before, so we see that she lost all integrity and able to reason when her brain escaped, lo these many years.  Well, guess that makes sense.

Your retorts to her were brilliant.  No, she wasn't a doctor back when we had to think.  That's probably a good thing.  She was raised to Worship the MRI.  Her original God is going to be a bit miffed, I would think.

Run, Red, RUN!  Your chance at escape is at hand.  There are good, thinking neurologists out there with self-respect and intergrity and smarts and who read the MS literature.  Find one of those.

To our Aussie friends - Really???  I was all set to root for her, too.

Quix
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1312898 tn?1314568133
Thanks guys,  I do remember hearing of others who were diagnosed then un-diagnosed or having different opinions from different neuros but can't remember who.  

I started having symptoms in July of 09, so the diagnosis in July 10 was probably quick for many of us here.  

I looked at all the differentials again today, and don't see anything we hadn't already ruled out.  There are some remote things that I don't fit the criteria for.  Then there are the Motor Neuron Diseases.  If I had one of those I would already be dead.  

Maybe it will have to become an emergency at some point.

Maybe it's not as hopeless as it feels.  

Red
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649926 tn?1297657780

  I am SO sorry that you are going through this - it is beyond bullcr@p!!!

The other day someone posted a question on being undx once you have MS and I told them something along the lines of it being unlikely because of the criteria they require before making the dx etc. Well I guess that makes me a liar liar pants on fire!

Then to make matters worse and please laugh - reading your story jogged my very bad cog fog back to a time in the 90's when I was first dx with MS. It was at the Dent institute in Buffalo NY and the son of the head dude said well you have MS. Come back in such in such time to go over treatment. I remember driving home and being in a daze and my sister was so happy to finally have me dx.

When we went back I saw the big cheese head honcho and he said NO MS I disagree!!! I was then dx with mixed connective tissue disease and I like you refused to go back. After some time I went to another neuro who dx me with Sjogren's and treated me for years. Then one more switch in the middle of a big MS flare to a place closer to home which is where I finally ended up with several doctors on board with my dx and excellent treatment since.

Can you believe that I forgot all about that???!!! Limboland goes on forever so I think when it's over I didn't want to hold on to the negative memories.

Well here's hoping that you too will forget this in time and when you do get a proper dx they give you excellent treatment. We are all here for you and you can be angry with the @ss of a doctor but not yourself!! Keep us posted on your visit next week.

BIG HUGS!!!
Erin :)
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293157 tn?1285873439
Hi Red.. sorry to hear about your appt.  I would be feeling frustrated at that point.  I'm Dx with PPMS and my LP is neg.  also VEP has been normal... so it's not an easy Dx to have... also they say it could be SPMS?  

hang in there and let us know how thing go
wobbly
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Avatar universal
I am so sorry you are going through this.  I certainly understand what this is like.  There is so much frustration involved with this ugly disease.  The stress we have to go through certainly doesn't help us one bit.  I wish I could take away the frustration!
Deb
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1253197 tn?1331209110
Hi Red

I am not sure what else to add and feel that I have come in very late and I have taken my eyes off the forum for a short time and missed being there for my friend.

So I think you need time to digest all this to really sort out the mumbled jumbled thoughts that are racing through your head. I feel you have been badly let down, messed about and not given the respect and understanding as a human being that you deserve.

It feels like someone gave you a life sentence, put you out to roast and then burnt you.
Life is not fair and you really do not deserve to be back in this place of uncertainty.

I can only send you my love and support. I am sure that God is there by your side but it feels like you are certainly being tested and it is at times like this that one questions one's faith. I have certainly found myself tested at times but have always found a way forward and learnt something that has made me stronger. You are in my prayers and I am thinking of you.

With love and big hugs

Sarah xxx
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1312898 tn?1314568133
Hi everyone,  the amount of kindness,  compassion, friendship and support you have given is tremendous.  I have learned to value all of you,  perhaps now more than ever.

Thanks to all of you who responded to this ridiculous development.  

I don't know how previous tests that were positive became completely the opposite after they were repeated here at the University.  I don't understand that she said I had PPMS last month and then totally reversed that decision yesterday.  Unless she talked with a more 'senior' associate.

I asked why the first LP couldn't be used she shook her head and said "we don't know how them messed it up"  referring to the 'other' lab.

For 6 months I have had hyper-reflexia in my left leg and hypo reflexia in my right leg.  The only response she could get from my right was a barely noticable quiver in that ankle.  the response of my right continues to weaken.  IIn light of this--- the SSEP discrepancy would seem very important.   No, it's a mistake of the equipment and the machine.  I didn't even think of bringing up the tendon reflex situation.

Her explanations are simply laughable.  

Like you have said, I will never have confidence in her again.  

If I ever have a test again, it will only be agreed upon if they agree to report the results/ docs impression in paper form or phone message.  

I have decided to stop this search and stop looking for answers.  I am going to do my best to accept this.  

I do have an appt. with my general neuro next week that I will keep.  I need someone to prescribe my pain/relaxant/gaba stuff.  I'm sure she will just say to maybe come back in 6 months.  That's fine.

I just can't take it anymore.  I don't even feel that God cares at all.  I have asked him to help throughout this whole process.  I don't think he really cares.

I am sick.  

thanks to all-----I love you

Red

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