Ready to freak out.........

[freddie2]

ok, so I went to the "new MS SPEC Neuro" today to get my results from my BAER, VER, & MRI. They were taken 2 weeks ago. The Neuro looks at my file & states that the BAER, + VER tests look ok. Then he says that the MRI in comparison with last one is the same. So he rules out MS. ---He starts mentioning the good old............"anxiety thing", & basically walks out of his office with me following him. He didn't know what he was doing because he prescribed me (50mg) Primidone. Which I can't take because of the severe contraindication it has with Fioricet & Klonipin. By the way, I got my notes from the MRI, the findings are: "a punctate focus or to of hyperintensity on the FLAIR sequence is suggested in the subcortical white matter at the level of the left frontal corona radiata. It also states;" Sulcal pattern. Ventricular system are mildly prominent but stable. Clinical correlation advised."  Well, I received no clinical correlation. In fact, when I went to the recep desk & asked for a copy of my BAER + VER tests, the Dr. said he couldn't give it to me because he hasn't  signed off on the BAER & VER test. He stated "they're just a bunch of numbers to me right now".-----------Wait a minute!  Didn't he just speak to me in his office & tell me that the tests looked ok????? Are you kidding me??---Then the staff told me to have a happy holiday. I'm going to have a fit!  BTW, can anyone interpret the findings here?
--sorry for the horrible attitude,

[freddie2]

Thanks again. I'm in the process of finding a new neuro. I just found out that my other test results are being sent to me, so I'll have everything I need, and start again. I may or may not have MS, but I have to tell you, 4 years now & still counting.........it's something. I just want closure, so I know what I have, & go on peacefully about my life.  

It's a process, that I refuse to quit.

Much Love,

[MCBCON]

Theodore was quoted as saying "Walk softly and carry a big stick."

If you cannot handle a big stick bring someone who can.

Better yet, find a different neuro.

[sllowe]

Hi Freddie,

So sorry to chime in so late. Many sticking points have been addressed in terms of lesions here but MS in the end is a "clinical dx."  If you don't fit the criteria clinically (by way of test results and physically) for MS now or in the past then this may not be MS.  There are so many other things out there that can cause what you are dealing with and the neuro should dig to find out for you.

That said, you were completley dismissed with no explanation or investigation of the facts of your symptoms. For this simple reason you should move on. Those records are yours. Those results of tests are yours. Hope you call that office and get ahold of those. They must be signed off on by now.  

We definitely understand what you are going through and at a minimum you should be treated with respect. I'm sorry you did not receive good care :(

-Shell

[freddie2]

Thanks much!!!
I really appreciate it. -Not giving up is really what I'm looking forward to. Thanks for being here for me. It helps when you have a community who understands what you're going through, and is there for you, at the same time.
Thanks again.

Looking forward to better days,

[Sumanadevii]

Go Freddie, GO!!!!!!!!!  I got angry enough after three and a half years with an idiot neuro and found another.  Bingo!  Diagnosed the next day!  DO IT DO IT DO IT!!!!!!!!

[Lulu54]

Hi freddie,
As you have now experienced, seeking out a diagnosis of this MiSerable disease is not for the weak.... it usually takes mass quantities of patience and time to get to the point of a neuro seeing the big picture.

I'm sorry you're heading to the next neurologist, but the effort is worth it.  

good luck with this next one.
Lulu

[freddie2]

Thanks to all,
I really appreciate the feedback, here. I need it. I want to be as knowledgeable about my "case" as I can possibly be.  I'm not going to take this "ruling out stuff" any more. I'm going to go & schedule an appointment with another Dr., and go around the mountain once again. I have the pics & notes from the MRI, but not the other 2 tests yet. I guess I'll have to get on the office's case to get them, & take them with me. However, I'm going to ask the Q's mentioned. It's really sad, that just because the Dr. gave me NO "clinical correlation advised"  my life has just gotten a little more complicated, once again.  

[COBOB]

The Neuroradiologists have a term called "dirty white matter."   It is a condition that happens when there are hundreds or thousands of small punctuate hyperintensities that cluster in an area of the brain.  These patients range from having no symptoms to very insidious disease progressions.  So the lesson is that one or two punctuate lesions need to be considered with the clinical signs and symptoms, but in some group of patients, these punctuate lesions can lead to "dirty white matter."

Bob

[supermum_ms]

I can sure attest to what everyone has so far stated, personally I do fit criteria 1#, not only with 'chronic' T2 hypertense lesions in white matter and deep white matter (areas unspecified), sx history consistent with MS and a number of clinical attacks, though i'm yet to get a dx because i dont have a T2 hypertenses in the copus callum (? CC) which I think is the slam dunk location for MS. There is a criteria but if its not being followed then your also up a creek with out a paddle lol.

I think Jen is right, too many neuro's are looking at MRI evidence and not patients, then you get the lazyier neuro that doesn't read the MRI themselves and dismisses clinical evidence and history because it doesn't belong if the radiologist concluded something else, even if that doesn't fit the patients history or if the MRI doesn't have a neon sign flashing MS here, here and here, that type of neuro isnt going to dx if the radiologist doesn't know enough because thats what the lazier neuro uses to dx.

Sometimes I wonder if the criteria just isn't even acknowledged, or if it all is dependant on their own MS knowledge and what they commonly use to dx, if your not fitting in to their expectations then you dont get a dx. If that is the case then someone needs to tell MS that there are rules it needs to abide by, MS can't keep going around braking the rules, it just isn't done lol.

On the anxiety theory, as i like to point out, you will know if you make mountains out of mole hills. It doesn't hurt to get that theory debunked, if there is nothing wrong with your mental health its evidence, and if there does turn out to be a problem in that area, then getting the help and skills to help has got to be a good thing in my opinion.

Cheers........JJ

[jensequitur]

That's what I meant - punctate hyperintensities are usually ignored by the neuro.  Even when you have lesions in other areas of your brain that are MS-style lesions, neuros will call the  bright hyperintensities 'UBOs' and think they aren't worth worrying about.

I had one clinical lesion, several UBOs, and two or more attacks, so I had to go through the spinal tap.  

I think neurologists are relying too much on MRIs for diagnosis, and neglecting to look at the patient's symptoms.

Here's the McDonald health page - it tries to break down the thought processes so you can understand it a bit better.

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36

[COBOB]

Two punctuate hyperintensities mean that they could not determine the shape (they are dots) and don't look "Dawson's Finger Lesions."  So they may not qualify as two clinical lesions for your provider.  The doctor should still consider your symptoms and signs.

Bob

[COBOB]

Two attacks and two clinical lesions (which the criteria doesn't define, but are usually considered to be oval lesions (Dawson's finger lesions) perpendicular to ventricles in the periventricular white matter of the cerebrum or similar lesions on the c-spine, t-spine or the area of the brain stem or cerebellum (the infratentorial area of the brain.)

Just like real estate, much about MS has to do with location, location, location.

Bob

[Sidesteps]

Bob,

Can you translate that for a newbie. :)

~SS

[COBOB]

I have to disagree.  2005 McDonald Diagnostic Criteria #1:

#1  2 or more Attacks and 2 or more Clinical Lesions -> No additional Evidence required.
#2  2 or more Attacks and 1 objective clinical lesion  -> Dissemination in space, demonstrated by:
                                                                                MRI -  or a positive CSF and 2 or more
                                                                                MRI lesions consistent with MS - or
                                                                                further clinical attack involving
                                                                                different site
#3 1 attack and 2 or more objective clinical lesions =>  Dissemination in time, demonstrated by
                                                                                MRI  or second clinical attack
#4  1 attack and 1 objective clinical lesion (CIS)      ->  Dissemination in space demonstrated by:
                                                                                MRI - or positive CSF and 2 or more MRI
                                                                                lesions consistent with MS and
                                                                                Dissemination in time demonstrated by:
                                                                                MRI or second clinical attack

All that stuff about 3 out of 4 of the following for a Positive MRI with lesions located in specific area is for PPMS ONLY

Make sure you are looking at the 2005 REVISED criteria.

You have to ask your doctor; "What is causing these attack?"
"What can be done to protect my quality of life?"
In my case I asked about what would be best to help me keep my vision and limit any loss of earning potential.  (Money talks.)

I'm taking the criteria stuff out of :

Multiple sclerosis: a comprehensive text
By Cedric S. Raine, Henry F. McFarland, Reinhard Hohlfeld
$160 or so at Amazon.

Bob

[HVAC]

If at first you don't succeed try another Neurologist or go back to your PCP and say okay not MS then what?

Alex

[jensequitur]

Unfortunately two punctate hyperintensities aren't enough to get a diagnosis.  According to the McDonald criteria, though, your history of symptoms should be taken into account, and it sounds like that has been ignored.  

[freddie2]

Thanks Paula,

I've seen other neuro's in the past, they're all pretty much saying the same thing, -which is nothing at all. (the anxiety thing). I have to find a new Neuro, this one didn't listen to a word I said, didn't offer me anything, & walked away from me. It felt like I went shopping & bought nothing!

Thanks,

[figuerpa]

Wow sorry about the horrible way you were treated. How can he tell you that the tests look normal if he hasn't reviewed them and signed off on them. Have you seen other neruologists? If so what have they said about what could be going on.

I can't tell you about the MRI results except that when they mention hypertensity they are referring to a lesion.

If I were you I would look for a second opinion or grab your doc by the horns and make him sit down and explain everything to you, after all that is what the docs get paid to do.

Good luck, sit down take a deep breath and count to ten and everything will be ok. Hang in there and I really hope that you can get the copies you need so that maybe another doctor can tell you what they mean.

Paula