Oligoclonal Bands CSF

[gambs1]

Had a spinal tap done, shows CSF contains 4 well defined gamma restriction bands that are not present in the serum control because the patience corresponding serum was not submitted unable to to define if these are systemic or intracerebral  

The neurologists said it was MS and sent me to a MS Specialist, who I saw yesterday and she says it's not conclusive, needs more test.  My brain MRI showed lesions and spine showed nothing remarkable but she said something looked odd on the spine MRI that they just passed over, so, another MRI of both and an MRA, ugh!!

Just wondering if anyone has any feedback regarding the 4 bands showing?

Thanks!!

[gambs1]

Minnie,

Thanks for sharing!!  And you sooo better not be responsible for the spinal, that would be unacceptable!!!!

I also think about the people, like the elderly who don't have anyone making sure these doctors are doing what they should.  Or people that have no med insurance and have kids that are sick and ugh, the medical industry is, I hate to say it, currupt!!!

Any news on your tests results??  Hope all is well.

@ everyone who replied here, thanks so much for your support and sharing your thoughts and frustrations for me and yourselves :)

It's a good day here even if I am frustrated :)

Best to all of you
xoxoxox

.

[gambs1]

Thanks twopack, especially for the shared frustration...lol.  

I went to 2 MS specialists, one said she wasn't convinced it was MS and the other said it was, ugh!!!!

The first one, who wasn't convinced, ordered two MRAs, one of neck and one of brain and two MRIs of the spine.  

The one of neck was to see if a cartodic artery blockage was causing this, that came back negative and haven't gotten the brain results back yet.

MRIs are scheduled for tomorrow.  

The first specialist, who wasn't convinced also suggested a sleep study, is she kidding me.  I don't have any problem falling asleep or staying asleep, it's staying awake!!!  She also suggested if nothing else shows up a pshyciatrist for depression!!

Yeah, I'm frustrated and depressed!!!  because I can't get any diagnosis or treatment.  I can't drive when the dizzy attacks are ongoing so I'm basically living half a life during that time.  And can that explain, brain lesions on a MRI, dizziness, facial spasms, vision problems, hands and fingers tingling and going numb, as well as a myriad of other annoying things my body is doing????  UGH!!!!  

Oh and suggested valuim for the dizziness, to which I replied, hmmm....won't that make the fatigue much worse?  She didn't respond...lol.

I also looked her up on one of those review sites and people all said the same thing...cold, rude...one person even stated she was soo glad when this doctor left the practice she went to for her treatment.  Oh boy, so why do they become doctors??   Oh yeah, so they can send up all those bills they never forget about...

Okay, done ranting :)

Hope everyone is having a good day!!!!

[gambs1]

Thanks Mike

[Mike_Shuswap]

My GP would not have taken blood at the time of my LP if I had not mentioned it to him. He honestly did not realize it was required, but he took my word for it.

Incidently, the presence of O bands in my SCF and not in my blood serum helped my Neuro dx me with MS.

Mike

[LilMinnie]

Yeah, ironic isn't it that the one thing they never forget to do is send the bill.

An interesting turn of events in my LP situation. Apparently they didn't get the authorization. The good news for me is if that is true, since they are a part of the network, according to my daughter who works for the hospital, I may not be liable for any of the cost because they performed the procedurewwithout the prior authorizatio .

Ugh, this is, as twopack said, way too much crap and stress for us patients to go through. Heaven help the elderly or others that just don't have the strength or resources to deal with this stuff.

After finally talking to a very helpful person a bit higher on the food chain I am supposed to have ALL of my results beforemy aappointment next week

I am so sorry that happened to you. It is inexcusable. I told you my story to let you know you aren't alone.

Hugs, Minnie

[twopack]

I’m so very sorry this happened to you gambs.  I really, really am.  I simply do NOT understand why this mistake happens time and again!  And now yet again!!

When a lumbar puncture is done to look for oligoclonal banding two specimens are ALWAYS required - CSF and blood.  Lab techs should know this.  Anyone performing the LP should know this.  It’s their job.  But, just in case their memories need jogged periodically about less frequently ordered tests, every lab has manuals and charts readily available that detail all the little ‘oddities’ of every single test they offer.

CSF and serum o-band comparisons MUST be done.  Without both it is impossible to determine if the antibodies that made the CSF o-bands were produced inside - or outside - the CNS.  It’s THE MAIN POINT of running the test.  Neurologists know this - at least they absolutely better know this!  

I don’t understand why neuros don't educate their patients before sending them off for testing.  And why labs wouldn’t inform patients immediately if incorrect specimens have been submitted.  Where’s the sense in either?

Look who’s asking….
I do apologize.  If I'm this mad I can't even imagine how you feel.  After all, you’re the one who endured an invasive procedure to supply a precious CSF specimen and then ended up with all but worthless results - all for want of health care providers with enough competence to obtain a relatively simply obtained companion blood specimen in a timely manner.

YO DOC - Ever hear that stress isn't good for PwMS?  Well, LPs are stressful!  Waiting for results is stressful!!  Ending up with ‘worthless’ results?  That’s a guaranteed bell ringer on top of the ol' stress-o-meter!!!

FWIW, some neuros (my present one included) have come to believe the LP has little to contribute toward diagnosing MS so seldom bother ordering one these days.  Sorry yet again.  That probably doesn’t make you feel any better.  I just wish neuros who value this test's results would value their patients enough to make sure it is done CORRECTLY - the FIRST time!!  

Ever wonder why hospitals, labs and doctors never forget to bill?  Guess that part’s simple reflex.

I do hope you get the answers you need in a timely manner gams - with NO request or requirement for an encore performance.

[gambs1]

Thanks LilMinnie

I agree and am thinking of a much much worse word!!  But trying to be a lady anyway ;)

[LilMinnie]

Yes, Sarah is right. I had heard of people having the LP done but no blood drawn at the same time, so I made sure it was in the orders (thank you, all of you knowledgeable people on this site!).  They have to take the blood at the same time as the CSF. I had my blood drawn in the same room after expressing my concerns  then was sent to the lab for the additional blood work that my neurologist wanted.

So am I reading correctly that they didn't take blood the same day?

If so, that really stinks (I'm actually thinking of a worse word) and the doctor should have known!

Hugs, Minnie

[gambs1]

Thanks Sarah :)  

You'd think the doctor would have ordered that as well!!!  

[SarahL2491]

they may not count because the serum was not there to compare or prove that it was only in the CSF.