LP question for Doc Q

[Ufrustrated2]

... anyone can chime in on this ...

as you know i had 3 LP's in 1986. those did show an elevated IgG index and high WBC, plus obands.

i had a 4th LP in 2008, that showed Obands >5 although the IgG index was not elevated.

is that 4th LP considered negative then? i was told today that 2 out of 3 items had to be pos on the LP. since mine only showed the Obands >5 then they considered it neg.

that is the first time i've heard that

what say you?

[Karen99]

My experience with this particular HMO has enlightened me on the tricks used.  Dodging the diagnosis is the name of the game and passing the buck.  Sad state of affairs.  

Sorry this has happened to you.  I'm going to take this offline.  

[Ufrustrated2]

they roll the dice because they are behind the shield of the gov VA. they do this to many vets not just me. i've seen worse cases. the ALS fiasco is one. AO (agent orange) is another. a soon to be, well it is already going on, is PTSD and brain trauma from Iraq & Afghanistan. many get mis-diagnosed to place them in the "black-hole"

this is to some extent a version of gov run health care. there will be a buearucrat between you and your doctor and there will be rationing. just take a look at the VA if you don't believe me.

well, won't get on a soapbox and will keep this on the thread.

i don't know what there is to prove. all i ever wanted them to do was give me the correct diagnosis instead of brushing me off to shrinks. i see on this forum that is typical for many here, either VA or non-VA doctors. but, 23+ years!  there is no law within the VA that they have to diagnose but they have to treat. without a concrete diagnosis, how does one get treatment when visiting other VAs and they look at your record?

now you know why they use the lowest power MRIs possible and all the other rationing tricks they use.

[Karen99]

Good grief!  Just about every time I hear about the neuro's treating you at the VA makes me want to raise a ruckus.  

They are not playing the cr*ps table in Vegas.  What more do they want?  Your O-Bands have always been elevated. This finding has remained a constant.      

I've been dealing with a ridiculous HMO for a friend needing a procedure.  I imagine this is what socialized medicine would be like.  Puts great fear in my person.  The balance of power is out of whack - much like some VA's, I suppose.      

[rendean]

Not that my medical opinion amounts to a hill of beans but there is no reason that you should have to suffer as you have due to incompentent doctors. However, Quix is correct in that "failure to diagnose" is very hard to win a case on. This I can speak to from  my professional experience. You would have to prove permanent damage and suffering due to the mistake and with MS that would be next to impossible. With no guarantee that  treatment with a DMD would stop or slow the progression of MS, you could not win.

Uf2: I am sorry that you cannot get a dx with the evidence sitting there staring them in the face.  It certainly is unfair. My heart goes out to you.

Warmly,
Ren

[Quixotic1]

You deserved a diagnosis years ago.  I'm so sorry you have to go through all this nonsense.  It is unethical and defines malpractice in my mind, though "failure to diagnose" is hard to win on.

Q

[Ufrustrated2]

>> Your >5 O-Bands - if they are Bands "UNIQUE" to the CSF and ones not seen in the serum, are a strong finding supporting MS.

yes, they are unique and have been for all 4 LP's over the last 23+ years.

i have a documented history and the finger image in my brain and a spot in my c-sec that was dismissed as "patient moved" or something like that.

thx

[Ufrustrated2]

>>What is the 3rd? (Slightly elevated protein?? - NOT a criterion.  or perhaps elevated Basic Myelin Protein??

he and my VA neuro's have said this repeatedly, used to stagnate a true dx I suppose . although the non-va doc did say i have the dawson's finger image and that was a more telling sign. suggested i go back to the va and start a dmd. one va neuro calls it "suggestive" of Dawson's fingers and one doesn't even mention it.

thanks for the info. with my shoulder/back thing going on now i just didn't feel like searching for the data and knew you would have an unbiased medical statement on this.

that was a first for me too what he said.

many thanks and hoep you are feeling well,
uf2

[Quixotic1]

Okay, here is a press release from a VA MS Center of Excellence.  They state that the link they provide is on a card distributed by the NMSS for diagnosis of MS.  they state that the VA must follow the McDonald Criteria to diagnose MS.

http://www4.va.gov/MS/pressreleases/Diagnosing_MS_McDonald_Criteria.asp

If you follow this link, you are taken to a private website which does faithfully reproduce the table which describes (in a chart form) what the Mconald Criteria say.  You can also find this on the NMSS site.

http://www.mult-sclerosis.org/DiagnosticCriteria.html

If you read this second chart you will see that the definition of a positive CSF is either O-Bands OR an elevated CSF IgG Index.  OR   OR   OR!!!!!!!!

Okay, here is the card that NMSS distributes to physicians with the MC clearly in chart form.  You can find it on this page halfway down under the paragraph about using the McDonald Criteria on a link called "pocket card".

http://www.nationalmssociety.org/for-professionals/healthcare-professionals/resources-for-clinicians/index.aspx

So, a major center in the VA uses this for diagnosis.

Okay, here is the original document published by McDonald in 2001 outlining their recommendations for diagnosis.  Where they recommend that the CSF be positive for diagnosis they say:  "Positive CSF determined by Oligoclonal Bands detected by established methods (preferably isoelectric focusing) different from any such bands in the serum OR by a raised CSF IgG Index."  

This quote can be found halfway down page 4 in the footnotes.

http://www.msdiagnosed.org/McDonald.pdf

How about all that for evidence to show someone your neuro is off base?!!!

Quix

http://www.msdiagnosed.org/McDonald.pdf

[Quixotic1]

This is a brand new made up rule.  It may need to go down in our list of Lies Our Neurologist Told Us.  Sheesh!  There is NOTHING (read that NOTHING!!!) in any of the published criteria that state that you need 2 of 3 criteria.  What is the 3rd? (Slightly elevated protein?? - NOT a criterion.  or perhaps elevated Basic Myelin Protein?? - NOT a criterion.

The McDonald Criterion very clearly states that suggestive evidence on the LP is the presence of "elevated IgG Index OR 2 or more Oligoclonal Bands."  Can these guys not read?  Is the idiocy of the VA so contageous as to spread block by block?

Most experts consider the positive O-Bands to be the most persuasive of the two findings in the CSF.  It is more specific than an elevated IgG Index.

The elevated white cells in the LP in the '80's might have been what threw them off then - other than incompetence.  High WBCs are a marker for infection and would argue against MS.

Your >5 O-Bands - if they are Bands "UNIQUE" to the CSF and ones not seen in the serum, are a strong finding supporting MS.

Your last answer is yes.  As I said before, the O-Bands are enough to call this a positive LP for the sake of diagnosing MS.  Once the O-Bands are positive the IgG Index is irrelevant.  nd remember that O-Bands are generally positive for life.

Again, you found yourself a neuro that is making up rules of his own - or misremembering what he is taught.  He needs to recheck the McDonald Criteria.  I will find the document.

Quix

[Ufrustrated2]

oops, forgot to ask this,

if in one year a LP shows elevated IgG index, and many years later it doesn't, but still shows Obands, is that a probable course for CSF findings.