question about LP necessity

[javaaddict]

Last question tonight, I promise!!!

My neuro wants me to do a LP. I said NOOOOOOOOO.

From what I've read, it's not necessary. Thoughts? I don't need any more pain.

Is it a good idea to refuse this? Have you? Why?

[22cyclist]

If your diagnosis is questionable, or you are having a hard time reaching a diagnosis, then absolutely have it. It is not really painful, and it is over before you know it. Plus, you get to spend the day in bed. Take the day off! Watch some TV, get some rest and get back at it the next day.

In short: DO IT.

Good luck
Lisa

[SNOOPY]

No test is necessary, you have a right to refuse any test or for that matter any medication or treatment.

There is a diagnostic criteria for diagnosing MS --- The McDonald Criteria. There is no single test, by it's self which will give you a diagnosis of MS. There is no symptoms that are unique to MS.

If you don't want the LP don't have it, the choice is yours.

[lorib]

The LP isn't that bad. Having it done was much easier than having the headaches I had after my hole didn't close properly and my crappy neuro's nurse just told me to drink more caffeine. My LP was also inconclusive. I guess what they were looking for in my spinal fluid wasn't there. I was diagnosed with MS anyway since I had the typical issues and got a new one each week.

Talk to your doctor about why you don't want one and go from there. It may help with your diagnosis or in my case, it may not.

[maitrimama]

I think it depends on where you are in the Dx progress and why your Dr wants to do it. I won't ever have it done again. I won't go into detail but it did not go well and someone dropped the ball and not all tests were done that were supposed to be.

Weigh your own pros and cons, and then decide. Good Luck!

[suzyguqt]

"someone dropped the ball and not all tests were done that were supposed to be."

Being a med tech (clinical laboratory scientist) who has performed the various tests ordered on spinal fluid, what often happens is that not enough spinal fluid is collected. The lab contacts the physician to see what tests he/she wants done with the amount that was sent and those are the tests performed. The lab does not take it upon itself to decide which tests are done. That is ALWAYS decided by the provider.

What is looked for in spinal fluid of suspected MS patients are oligoclonal bands. If they are present, it is indicative of MS, although banding is present in other diseases. Approximately 80% of those with MS will have oligoclonal bands. That means 20% will not but still have the disease. The McDonald Criteria does not require an LP for MS diagnosis. MRI is less invasive and is a better diagnostic tool for MS due to the visibility of lesions.

As others have said, it is up to you if you have this test. Personally this lab professional will not be having one. Good luck to you.

[Jules A]

I declined. My regular neurologist wanted me to have one but I had already been diagnosed based on MRI and MS episodes so what was the point?

According to my MS neurologist who I got a second opinion from unless I needed the LP to convince me to start taking a DMD it was not necessary.

As I have said before suddenly becoming nearly blind and a MRI that looked like Swiss cheese was proof enough that something was horribly wrong. I was ready to start medication as soon as they could ship it to me.

FWIW someone who has MS can have a negative spinal tap. Good luck with whatever you decide.

[lemstar]

No spinal tap for me either. I refused it, was diagnosed conclusively without one, based on my MRI. Its not conclusive---

[lstrl]

I was going to have one, but when the girl at the dr's office got into a fight with me on how they couldn't request a consult (aka, wouldn't) for a dr at the hospital where my insurance would pay pretty much the entire bill, I basically told them they could take their stupid test and shove it. One flare later and my new set of MRIs provided a very clear cut answer for my new neuro. I'm definitely glad I didn't get the LP. The idea of that scared me to death. I also don't see the point in having an expensive invasive procedure if you can avoid it.

[cosake]

I had the LP and no problems whatsoever. I had it because I needed convincing that I should start a medication as I was only diagnosed CIS at the time.

It is your decision to make.

[aitch10]

I agree with PP's - it's not that big of a deal and it's a good way of confirming diagnosis.

[onlyairfare]

I've never had an LP, but I was diagnosed clinically without any invasive tests at all - I had optic neuritis documented by neuro-ophthalmology exam, then a year or two later I had a weak leg. Two episodes/lesions separated in time and space, no other explanation for it so I was diagnosed.

If I needed an LP to make the diagnosis, I'd have one, but it wasn't necessary, and I did not want to be diagnosed anyway back when there was no treatment.

The doctor cannot force you to have an LP, so you shouldn't be pressured into it if you don't want it.

[dart12]

My first neuro offered spinal tap, we weighed up pros and cons, then decidedto wait. I saw a second neuro for a second opinion and he threw me out of his room when I asked if we should wait on tap, he opened door and said come back when I was ready for the tap but would do nothing else for me until I had the tap. I stuck with my first neuro and a few months later I was diagnosed conclusively with ms based on MRI results. Moral of story is not to undergo any test that you are not comfortable with, my gut instinct was to wait on tap and I always follow my gut instinct beside I have learned throughout life that it is wise to do so. A tap wasn't required for my diagnosis but maybe you will require one at some point for confirming diagnosis. Either way, you should make up your own mind but don't be forced into anything. Good luck :-)