Please help with LP study results (or absent results)

[RedFlame]

I called my neurologist office today and told them I wanted the results of my spinal fluid study.  First they gave me the doctor’s initial impression report.  I went back in and asked again for ‘the lab results’.  

My doctor ordered 4 vials of spinal fluid.
#1 and #4 viasl was for cell count differential, protein, glucose etc.  

I get home with the report.  The results listed are only for vial numbers 1 and 4 and appear to be normal blood counts etc.  It also says the Herpes virus 1&2 were negative.  

There is absolutely no mention of vials two and three, IGG index, OCB Igg synthesis etc.  Does this mean that the test was negative?  Or did they make a mistake?  

What is the Herpes about?

It’s really bugging me that I don’t have the results of vials 2 and 3.  

thanks Lois

[addicted2harleys]

I have sent for the reports on both of my LP's.  Unfortunately they are in Ohio and I am not.  lol

My first one was taken in emergency situation.  I was there for like 13 hours.  I was on pain drugs and out like a light for most of that time.  My boyfriend was given the results of all the testing they did...including the LP.  So, I guess I have to assume they didn't do the vial 2 and 3 on me that time.

My second one was done through my 1st neuro.  Scheduled.  Even if I had looked at the orders, I would not have understood them at all back then.  I believe it was only a week after that I had my next neuro appointment when she told me no ms.  

I have sent for my records of this LP also.  

I am beginning to think I have never had all the complete testing on my LP's.  And that really irks me.  It is so invasive for me and stressful....and to think it was done for nothing.  

I can't wait to physically get the reports in my hands.  I sure would like to bypass getting one done again, if at all possible.

Hugs,
Addi

[RedFlame]

Hi Addy,  I actually wondered if you had this test done.  I think you need to seriously look into this,  they couldn't possibly know the results right then and there unless they were looking for gross amounts of blood.  

I would call the facilities and send for the results, that's awful that no one discussed the results with you.  Were yours done on an emergency basis or in an doctors office.  My doctor wrote the orders down on a script and I had it in a pain clinic.

There were 4 vials taken, here is the script and order:

Opening pressure and CSF study
Vials 1 and 4 -cell count and differential,protein, glucose
Vial #2 VDRI, Lyme Titer
Vial #3 Igg index, Igg synthesis, OGB

As Tiredofbeingnumb talks above vials 2 and 3 are the send outs, the others are probably done within a day.  Quix said they most likely go to the Mayo-Clinic.  

Also, someone was talking one day about how The Mayo-Clinic says there has to be 4 O-bands to be positive, whereas, most others think that 2 are enough
I
lois

[addicted2harleys]

I am glad you asked about this, lois.  I had no idea that it took so long for LP results to come back.  I would have freaked out if I saw that there were two missing vials....especially because LPs can be so invasive.  

Good to know that they most likely are still in the testing phase.

Got me wondering though.  I have had 2 LPs.  The first one was in a hospital in Ohio and they told me my LP was normal that same day I had it done.  The second one was at another hospital in Ohio and the neuro I was seeing had the results (again negative) within a week.

So, maybe mine weren't tested for O-bands??

Addi

[RedFlame]

Thank you so much Quix.  I was hoping that you would also respond to my question.

I didn't realize that the tests would have to go that far away and that it took so long for the staining and culturing.  

It scared me to think I went through an LP + 4 vials of fluid to be reduced to glucose and blood counts.  

THank you so much!   loi

[Quixotic1]

Tired gave you good info.  The vials each go to different labs and sometimes have to be shared between labs.  Some tests can be run immediately and results available within minutes to a hour.  Those are usually the cell counts, glucose and protein.  Then there are quick tests to look for common organisms that cause meningitis and encephalitis.  So the Herpes would fall into that category.  Herpes encephalitis could cause symptoms that look like MS or other neurological diseases.

Cytology needs to spin down the cells that might be there and stain them, then examine them under a microscope looking for cancer cells, fungal cells (causing any of a number of fungal meningitis) and tuberculosis.

The O-Bands, globulin synthesis, and IgG Index is often sent out and can be a couple weeks in coming back.  The most common lab that runs this in the US is the Mayo Clinic who developed the currently used test for O-Bands.

Then finally some fluid is often cultured for bacteria - this takes 3 days or so; viruses can take weeks to culture as can the funguses and TB.


Tiredofbeingnumb - It is great to have you here to share your experience.  It made it easier while I was out of the office on the cruise.

Quix

[RedFlame]

Thanks to all of you for helping me with this.  I just couldn't believe that I went through all of that for a couple of blood counts.

Tiredofbeingnumb, thanks so much for explaining all of this to me, it really helped.  It had to have been sent out like you said.  Just another lesson in patience.  

The information that you gave would be something everyone could benefit from

thank you,  lois

[Tiredofbeingnumb]

I believe at most institutions, the testing for the oligoclonal bands (I've seen it where I've worked ordered as a "MS panel") is what is known in the lab world as a "send out" test. See, there are labs in doctors offices and hospitals, and they do the basic testing like bloodwork and cultures.  There are also places called reference labs (I now work in one, I used to work in a hospital, so now I'm familiar with both kind of labs!) that do high volume of basic testing in addition to more specialized testing, including the oligoclonal band testing. So, when we refer to "send out"  testing, we are referring to those tests where we have to ship the specimens to these specialized labs. It takes a few weeks to get the results, not because it takes a few weeks to run the actual test, but that it takes time for the specimen to get to the lab, for the lab to process and test the specimen, and for the doctor to get the result.

Now I don't know exactly how they test for the oligoclonal bands, I just know that it is most likely being referred to a reference lab. I know for a fact drs offices do not do the test, and most hospitals don't. I worked in a pretty large hospital with a large lab, and even we sent that test out.

So, that's why it takes a while to get the result. As far as the tubes go, I think pretty much when a lumbar puncture is done, if they can get 4 tubes worth of CSF (cerebral spinal fluid) they will. Tube 1 usually goes to cytology for the cell count, Tubes 2 and 3 usually go to Microbiology and Tube 4, whereever it is needed. Sometimes I had to call the main lab and hunt down the 4th tube when the doctor wanted to add on a test.

Hope that is helpful! I'm sure your results will come in soon, and I know it is easier said than done to tell you to be patient. :)

[HVAC]

It took me six weeks to get my results. They sometimes send them to several places.

Alex

[RedFlame]

Louey--thanks, that was helpful.  I thought there had to be more

lois

[Celery47]

I believe the IGG/o-band reports generally tend to take a couple of weeks...  I think I got my cell counts, protein/glucose and disease tests back in a week or so, and then it took another week for all the business about IGG and bands to come in.  So hopefully they're just still in the works for you too?  Hope this helps!  Good luck :)

-Louey

[RedFlame]

I guess I was hoping if someone might know if this was typical, if this is all you get or something.   Thanks

[jensequitur]

Maybe the lab hasn't done those yet?  I'd call them back and find out.