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.

47 Responses
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1342095 tn?1283120251
Omg Red!! That is awful! :( I can't even begin to imagine how you are feeling right now. I am SO sorry. To wait in limboland and be diagnosed only to then be told it was an error?? I hope you are going back to your PCP. I would def get another opinion. Again I am so so sorry. Hopefully you get answers soon.

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338416 tn?1420045702
Man, that suuuuucks...  Honestly, it sounds like she's not ready to sign off on a MS diagnosis, which is very common for neurologists.  Perhaps it is time to go back to the general neurologist - you can ask him/her for a referral to a different neurologist.
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1396846 tn?1332459510
Don't feel ashamed or humiliated. I don't understand how she can say you have PPMS at one visit and totally turn that decision around on the second visit. You should go get another opinion and see what comes of it.

I am sorry you had such a terrible experience at the doctors today. Take a deep breath and relax, don't let her get you down. Go back to your other nuero and see what comes of it. You know you are ill and getting worse and so does your neuro or else he wouldn't have sent you to a specialist.

Hang in there Red, we are here for you. You can vent to us anytime you want, we are always willing to listen and offer support.

I am confused as to how the machine didn't work on one side of your body but worked on the other and it doesn't seem possible to have Obands and an elevated IgG index in one test and nothing in the second.

Keep your head up and just keep fighting till you get the answers you deserve.

Take care and big HUGGGGSSSS to you
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Avatar universal
No Way!!! I Agree AWFUL AWFUL AWFUL!!! You so don't deserve this.  I send a big kick in the rear to that neuro with all the UMPH I can muster.
Run!!! Run Away from her and request a different specialist.  Don't give up.  Demand the right help.  
My MRI has not changed in 20 months, AAARRRRR I am angry for you.  

Sending you big hugs and prayers for the right Dr to find you.  

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1406332 tn?1315962760
I'm so sorry for all the BS you were given today. I can't even begin to imagine what you are going through. I'm sure when a person is dx w/MS...you have your ways of dealing with it, accepting it, and moving on with it...then to have it all taken away and replaced w/a freakin vitamin...ahhhh

As I too have said before, I always leave with more questions than answers.

I'm truly sorry for the emotinal roller coaster you must be on right now. Please let me know if there is anything I can do to help.

At least you know you can ALWAYS vent to the wonderful peeps on here.

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Avatar universal
We should all live in a happy commune where we can scream and rant and support eachother I reckon.

Just "where" would be a problem...

That ***** Red. And as my kids would say "WTF?" SO did the genius give you any indication of something ELSE it could be?

Don't be sorry, we al feel a trifle mental now and then. I do, daily.

Chin up! GO snifff a horse, they are yummy and take the bad feeling away.
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1312898 tn?1314568133
I was so stunned!  I don't understand the need to 'explain away' the criteria that are positive.  It was the same machine and same techs that administered the SSEP.  How can you take some of that as OK but not the rest.  I couldn't believe my ears.  

Exactly,  how can she say PPMS 6 weeks ago and then change her mind "you may have another disease"  I just felt like my head was spinning.  

There is like a reluctance to diagnose MS and I don't understand at all.

Thanks for the understanding and helping me get grounded.  The whole thing was 'crazy'.  It was like she was talking out of both sides of her face.  

I felt good to refuse to take a script for high dose Vit D. and telling her I wouldn't take it.  

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1312898 tn?1314568133
I know, Jemm. I love your son's stance.  I wish we could all live in a commune.  Then we could go to each others appointments and stay in the room with you---rooting each other along.  

Helping the doctor figure things out.

No, the genius didn't say what I have

I am mental most days

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1406332 tn?1315962760
I like JemmAus' idea...some place we could all live together...as well as the best neuros in the world.

Just make sure it's some place nice and cool...the heat just about killed me this summer.


Keep your chin up Red!
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1260255 tn?1288654564
WTF is on target with this one. Can't imagine what you must be going through right now. To have gotten so far through the medical maze and then "SNAP", it's gone, well, just hard to fathom.

My sense is that the general neuro will tend to defer to the specialist, which leaves you where???? While it MIGHT be nice to know this is not MS, it also WOULD be nice to know what else it could be. Your neuro did you a tremendous disservice by not offering differential diagnoses to guide you on your way and just wave you off to a general neuro.

Can we all say the words PISSED OFF? Sorry, Red, I know that you are a genteel woman, yet sometimes situations call for peeling off the white gloves.

I would be beside myself if I were in your shoes, having gone this far along in the journey. Your neuro hung you out to dry.

Red, as you know, it is all important to have copies of all of your medical records. I would not go back to a general neuro; its important to see someone who specializes in disorders with your characteristics. Hopefully, there is another MS specialist you can see soon.

Cry, scream, rant and maybe even laugh, if you can, at the idiocy of this.

Somehow, I hope you have some sweet dreams tonight.

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560501 tn?1383612740

    I do not even know where to start!  Yes I do....First off, Here is the Biggest Hug to you that I can give ;)   Oh Red, This has got to be the worst "Roller Coaster Ride" that I have ever read about on this Forum!  I am just so very sorry my Friend.

     The last thing you need right now is to have the words..stupid, Humiliated, and shamed!  You are so Loved and You WILL get through this!  i think the correct words would be.......totally numb and in a dream like state of mind (actually Nightmare).

     The nerver of this doctor to Dx you w/ MS.... BUT PPMS, and then come Bee-boppin in today saying guess what..."NOT"    SHe obviously has no clue as to the emotional toll and trying to accept this Dx then snatch not only the PPMS but No MS period away from you is quite un-nerving!

     Try and take a deep breath and breath!  And I certainly am going to say to you..........No Worries, Because everything IS going to be Alright my Friend!  Believe that.   take a few days or weeks off then perhaps collect all your test results, Mri's, and Doc notes and go elsewhere!

    Please know that there is someone much higher looking over you and has your answers. Just trust and believe and you will be led the right direction ;)

Take Care,

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1140169 tn?1370185076
So sorry for the BS you are going through!

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1312898 tn?1314568133
Well, I had a big long thank you message and other things for people above and it disappeared.  I hate that.  I'm going to bed and will be back tomorrow

HUGS,    Red
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1336491 tn?1340619541
Hi red

What an absolute nightmare !!!!!!

hope you calmed yourself down now slightly - i cannot believe what you been through, bet you feel like these drs kick you when your down.. they are USELESS

i dont really know what to say except MASSIVE HUGS, and rant rant rant if you like get it off your chest.. these people get money for doing nothing right if you ask me gggrrrr

lots love jan xxxxx
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572651 tn?1530999357
Speechless .... that's what I am.  Everyone else has done a great job of covering all the points I would mention, anyway.

I hope you get a good night's rest and perhaps I can muster up the correct indignant words without getting ****'d by the censor.

hugs, L
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1394601 tn?1328032308
Try to remember, the neuro I sat with for three years...His exact words my last visit, "Here is some Vitamin D, it is about the only thing is any doctor is going to do for you."

Yeah, I guess until some doctor actually did their job.
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Avatar universal
You know Red, this is funny, where you said "-rooting each other along.   "

Look up "australian slang rooting" on google.

I think you might want to re-phrase LOL!
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Avatar universal
I am shocked at this neuro's flippant way that she took back your dx. It really messes with someone's mind to think you have one disease, then have it ripped away without any explanation of what else it is.

My neuro told me that many times an LP can come up negative for O bands. I went ahead and did it, and mine showed the bands. He had me dx without the other tests. Mainly MRI, symptoms, family history. My VEP, SSEP came out negative.

The prior neuro didn't want to dx me either. He kept pushing me out 6 months to re evaluate. I never understood what the big deal was to dx me. I figured I would be in a wheelchair by the time he dx me and started me on anything.

Find another neuro. I am soo glad I fired my last one. He shouldn't even be calling himself a specialist.

You can yell and scream all that you need to here! We "have your back" and completely understand what you're going thru.

Many Hugs
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1218873 tn?1300091216
This is totally unbelievable! I feel so sorry for you.

But on this neurological road it seems that no matter what the results of their high tech tests, they can all be thrown out the window.

Perhaps it's just a like lucky dip as to who is Dx and who is not!

Did the neuro not even consider it might be the 2nd LP that was incorrect!

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1394601 tn?1328032308
It seems to differ from neuro to neuro.  Mine had me do an LP.  She said it really didn't matter what the LP said.  Either way I had MS.  She also canceled the EP that had been schedule.  She said we had the answer and it wasn't necessay.

I think Red just got up with a neuro that either is not an MS specialist or one that is waiting (seems not so unusual) for the diagnosis to be so evident none would ever question her.
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1207048 tn?1282174304
Oh Red :-(

Your neuro is a dork. Why are 9 lesions the magic number? I don't understand that at all.

I remember you saying your physical therapist you saw used to practice neurology, right? He seemed very knowledgeable and kind. Can you call him and see if he will recommend a new neuro for you?

I wish more neuros understood that we are not all little MS robots whose bodies act the same way.

*sigh* I don't even know what to say. But, I'm tempted to start using Jemm's slang meaning of 'root'..."Root that doctor and find a new one!"

((hugs)) my friend.
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Avatar universal
Hey Red, this totally sux. I'm so sorry.

You need to get rid of that stupid neuro pronto. For one thing, you'll never have confidence in her again. For another, she's missing some important factors about diagnosing MS. Many neuros are skipping LPs altogether because they're invasive but don't prove anything. Indicate, maybe, but not prove.

I'm fairly sure (but check further) that those with PPMS are less likely than others to show positive with LP. Also, PPMS often has few lesions, at least to begin with, as direct nerve death is more common. So the dumb 9 lesions thing doesn't even apply for PP. I don't get it that it applies to any MS, but particularly not to PP.

The comedy of errors in EP testing is just ridiculous. How can so many people have fouled up? I'm thinking they didn't. But your neuro's attitude of 'Guess what?' is also ridiculous and unprofessional, no matter what the final outcome is.

I fear you'll have to start over again, as so many of us have. But please persist. If you actually don't have MS you need to know what you do have. That dodo should never have dropped you, but now that she has, drop her, forever.

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1386048 tn?1281012333
red!!  omg!!!

this is horrendous!  

and btw, why is it now that the last mri is correct and the first suddenly incorrect?  how does that make any more sense than the eeg machine only working on half of your body?

definately, speedily, get back in to see your original neuro.  perhaps they will help you sort this mess out that the ms specialist has begun to create.  

as if you of anyone in the world needs this added stress right now...please take good care of yourself...do everything in your power not to let the stress get to your body.

huge, gigantic hugs from me to you!!!!

xoxoxoxoxoxo  michelle
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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


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