multiple LP's & the rationale

[Ufrustrated2]

i had a LP in the late 80's that were positive for O-bands. i had another one in 2008 >5 O-bands. now i'm told they want to do another one. frankly, i don't even want to do the week long headache deal again. getting them to pay for a blood patch is quite hard.

so, for Doc "Q" and others, why would i need another LP, if these two past series were positive?

[Ufrustrated2]

it was very helpful in the sense to ease my mind in that i was thinking the same thing you are, only in laymen's terms.  i have a tendency to get ballistic over these type things with my situation with the VA, and only on this list has anyone helped me to calm down. i say that because only on this list do folks present an empathic understanding due to  they have been there or are there. my friends, even my family doesn't quite believe me about all this. and when a doctor out of the blue pulls this today, well, it's like getting sucker punched.

so why fly to LA to have an LP that can be done right here like last time? he said because they probably don't have a 22 gauge needle here and that would ensure i more than likely wouldn't get headaches afterwards.  odd thing is, that is the gauge needle they used the last time. LOL. he is also the one back in Nov 2008 that stated i didn't need another LP due to the one in the late 80's was pos and the one in 2008 was pos. so yeah, this is really odd. and with the heat here, and my nerves a bit off the normal chart, it just adds BS to it all.

You and others do help here because no one else understands.

[Quixotic1]

I have to go along with most of the others.  There are few diseases that have more than 5 O-Bands as part of the disease.  The infections and ADEM typically produce only one, if they have any, thus giving rise to the "2 or more" as a positive result for MS.

Given this, I cannot imagine how anyone would think that >5 could be anything but MS, except in the rarest instances.

In MS, the O-Bands persist for life and you might accumulate more with time.  They are not seen to disappear as can happen with infections and ADEM.  In MS O-Bands are persistent and cumulative.

You doctor is maintaining a stupid position.  Demyelinating Disease could be "anything??!"  WTF!  Suddenly people are acting like this is a legitimate diagnosis that has a huge number of diseases in it that cannot be distinguished.  Seems like he is insisting on the LP because he can't eat crow regarding the first LP being positive.

That Navy doctor hadn't a clue when he spoke about the O-Bands being related to WBCs or monocytes.  They are produced by clones of identical "lymphocytes" which are producing vast amounts of a single antibody (which causes the banding on the test).  He was talking goobletygook - nonsense.

But, if the LP os the only thing that is standing between you and a diagnosis (???) then I would do it and provide ahead of time for any needed blood patch, like you are thinking.

This whole thing has an Alice In Wonderland air to it.  I can't believe you are caught in this nonsensical merry-go-round.  Somebody needs to start thinking with their Big Boy Brains.

Sorry for the rant.  It probably wasn't helpful.

Good luck.

Quix

[Ufrustrated2]

wise advice and I will do so. I don't mind the LP, that is a piece of cake. It is the week long headaches that lay me out that i'm stand offish about.  I will request the patch in writing on the LP consult so I can just get a ride there and get the patch without the red tape.

i've never had a negative LP for O-bands. a Navy neuro doctor once wrote one of my LPs was a "false negative", i think he meant "false positive". however, the O-band tests have always been positive. back then, the WBC began to go down, so maybe he conjectured the O-bands and elevated IgG were false due to the WBC going down. he said my problem was monocytes or something like that.  beats me,

at the least, that is a brain inflammation and i know in my gut that they should at the least diagnose that and treat it.

thanks for the advice, i will make use of it ...

[Fluffysmom]

Hi there,

If you trust this guy and are willing to go through another LP, maybe you should call back and make it clear that you want assurances that a blood patch will be performed within 24 - 48 hours of developing a spinal headache, should that happen.  Have it put in writing.

It wouldn't hurt to ask them to put in writing why it is that they want to do a repeat LP, and what specifically it is that they are looking for.  I do believe that's within your rights as a patient.

I dealt with a huge institution, and things do indeed get mixed up, crossed wires, or whatever.  Even at my usual hospital, I went in for one test and the tech started setting me up to scan my thyroid.  I knew she was on the wrong part of my body, and requested that she check my orders.  She did, and changed all the settings on the machine.

It wouldn't hurt to call again and make sure that everything is clear before you go in for another LP, to make sure it's necessary and why.

Wishing you the best,

Kathy

[Ufrustrated2]

Thanks for your input. I hope i answered what you needed. If not, let me know.

I respect this Dr in LA the VA is sending me to. He even laughed a bit on the phone today!  Maybe their computer system had a glitch? The VA compartmentalizes many systems so it is a possibility there was a slight mix up.  

As for the turn-around, I can't say. He thought the 2008 LP was negative as i mentioned earlier. It is a huge org and he is very busy kinda guy, so I'll give him the benefit. My whole goal for this is to get diagnosed and get on with a treatment. I've got med problems that mandates a correct diagnosis and treatment plan. I'm trusting the Dr knows this, but with the VA, sometimes I'm not sure.

Thx

[Udkas]

Hi we must have posted at the same time!

How confusing for you.

I understand your reluctance for the LP.  I hope it brings some answers. Seems wierd that he has had such a turn around.  Damn confusing for you.
Udkas.

[Udkas]

Hi there,
I think they are O bands are there for life, they don't change but however you can have increases in other things and decreases in other things that might give them a better picture of what they are dealing with. I think if they were certain you had MS they wouldn't be repeating it?  I don't know, I would as your neurologist why?

You certainly make the criteria for the amount of O bands for MS criteria but they test all sorts of things now from your spinal fluid and with different demylinating diseases they find different things.

Best wishes, technology is much better now, so perhaps you won't get the headache but I can understand your reluctance. Ask why and please let us know, so we can all be the wiser.  It is your right as a patient to understand why a Dr is requesting this procedure and what he/she hopes to gain from this.

Good luck,

Best wishes,
UDkas.

[Ufrustrated2]

I spoke to the dr. he said the first LP was negative so he didn't want to treat a non-progressive disease or something like that. i reminded him that it was positive and that is why i was sent to him in the first place. he looked at the reports again and apologized for the error. the O-bands were in fact >5 but something else on that LP was negative.

he still wants to do another LP though, I guess to see if there is an increase or decrease.

i reminded him that the MRI impression was for "demyelinating disease" [again] and he mentioned that could be anything. a month ago he wanted to discuss DMDs and mentioned he was 98% sure i had rrms.

my hearing isn't so good and my irritability with this heat here is only aggravated, but I think that is the way he stated it.

a merry go round anyone?

[Ufrustrated2]

can't really read the first one due to i don't have those records. all i know is the second one was >5.  that is 23+years apart from the first one.

[shelleyannjohnson]

my understanding is that when you have MS your o bands should NEVER decrease, then can possibly increase. Once you have them, you have them for life. However in several other diseases of the CNS, such as ADEM, (I am currently in Limboland stuck between the diagnosis of ADEM and MS) your o bands will decrease and in some cases even disappear. That is just my understanding of why he may want to do another LP. Do you know if your number of o bands from the 2 different LPs were the same number or even greater? I am just curious.

[Ufrustrated2]

so they increase but not decrease? would they be looking for a decrease ?

curious

[Ufrustrated2]

diagnosis is still at "demyelinating disease of the CNS". MS specialist sent me DMD booklets for me to study and choose one. I was to have an appt for follow up MRIs and discuss the DMD and hopefully start on it. he said it was smart to start on them asap and that he is 99% sure i have rrms but didn't want to commit to that just yet.

then today the office in LA canceled the appt and said the PA wanted another LP, which i thought odd.  i see you and others here do too ... gee what gives

[Lulu54]

Hey there, for the life of me I can think of no good reason for them to repeat the LP over and over.  You have a dx of ms, right?  You're on DMD's, right?  

Unless they are thinking that the o-bands have incresed, but that isn't going to change anything with you have MS already.    It is a mystery to me - I would ask the brilliant neuro what the thinking is.

keep us posted,
Lulu