Not all doctors require the spinal tap and keep in mind that not everyone has O bands. I have none but have brain and cervical and thoracic lesions.
It sounds like a lot of testing but all of the mimics have to be ruled out first. For some it comes easy, for others of us it takes years and several neurologists.
If they make you do another spinal make sure they draw blood at the same time. Perhaps you won't have to. But Dennis has given you some excellent advice.
About the spinal tap, the doctor wanted to test primarily for MS, but also for other possible infections like lyme. But the MS tests were listed last on the scrip so the hospital deprioritized them when they ran out of fluid. The fluid was sent out to multiple labs and the tech at the hospital was very apologetic and called all the labs to see if any of them had any leftover fluid but no luck. What really peeved me is that they used some of the fluid to test for HIV and STDs--honestly, why waste precious spinal fluid on things where blood tests are perfectly adequate? And this was an expensive spinal tap--she had spasticity at the time so it was ordered with light anesthesia. Sometimes I feel sorry for my insurance company!
I am firmly resolved to ask a multitude of questions about each and every test from now on. We've also had an overnight sleep test with MSLT in the morning where she met the standard for narcolepsy but the results are considered invalid because proper protocol wasn't followed on the MSLT. Yet another big time test to redo..This is all pretty exhausting.
OMG! I can't believe that they may have suspected MS and did not test your spinal fluid for O bands first! Why would they put you through all of that! I'm sorry about that. Were they testing for meningitis or something else? o.O
My first MRI, ordered by my primary care doc, was in an open MRI. This is the worst option available. (I didn't know any better at the time). However, they were see the demyelination.
When I went to the neuro for results, he said the open MRI was just about useless and sent me for an MRI in a 1.5T machine.
Those results were much better than the open machine.
I now have all of my MRIs on a 3T research machine.
The difference is like looking through a coke bottle at the moon versus looking through a powerful telescope at the moon. The difference is amazing.
If you have any say whatsoever - get in a 3T machine. Or a closed 1.5T machine at the very least.
Best of luck to you!
Deennis,
Have new neuro appointment mid-March and will definitely ask for new MRIs using appropriate protocol and machines based on your information. Have already had spinal tap done expressly for MS and they ran out of fluid and tested for everything except olligoclonal bands and Igg. The lab told me later those two tests had not been prioritized on scrip. Still remains to be redone. Yikes! One has to micromanage and follow up on everything!
Marie
Marie,
Using a MRI that was not done with the MS protocol or on an open MRI could rule out MS even though you might have it. (False Negative). Personally I would not want that to happen to me.
Dennis
Sailorsong,
Thanks for the quick response--very helpful. While I am not giving a high probability to MS, I was wondering if using these other MRIs to rule it out was appropriate, particularly in a young person.
Marie
The quick answer is that there is a MS protocol for a MRI when MS is suspected.
In essence this means they should do thinner slices with the imaging in order to pick up the lesions in the brain. I'm not sure if this also applies to the spine images as well, but suspect it does.
The other thing that comes into play with a MRI when MS is suspected is the type and power of the MRI machine.
The open type of MRI machines are just about useless for checking for lesions with regard to MS. I'm not up on the technical aspects of why this is, just know that it is highly unlikely that these machines will pick up the lesions.
The closed type MRI can pick up lesions at as low a power as 1.5T within the brain, but have a hard time picking up lesions in the spine. Even at 2T or 3T the lesions in the spine are hard to pick up due to the structure of the spine. But the higher the power the better they get at doing this.
Dennis