Another clear MRI... is lumbar puncture necessary at this point?

[brittkl]

Oy. I've had symptoms for about about two years now, including nystagmus, double vision, tingling, spasms, and others. I had two 5-minute neuro exams that were normal when everything first started. Last month, I saw an MS specialist at USF in Tampa who did a complete exam, and he found several signs, including a relative afferent pupillary defect (which he said meant the eye pain I had had around the same time I had double vision was optic neuritis), hyperreflexia, and some sensory defects. He said I had dysmetria, too, but it's not in my medical records, so maybe he changed his mind, ha.

Anyway, he was convinced that I had MS, and that another MRI would show lesions. Well, that came back normal except for minor disc bulge, some fluid in my spine (or something like that), and degenerative disc disease. No lesions.

So, I'm scheduled for a lumbar puncture tomorrow, but after reading about it a little more, I'm absolutely terrified. I also realize I might be out of commission for at least a week, which I can't afford. The doctor recommended I get the LP because it will "help point him in the right direction," but I'm having second thoughts.

My questions are:

1). Should I get the LP? I've heard that it might not even show anything wrong if the person is not in experiencing problems at the time of the puncture. Also, with negative MRIs, they still can't diagnose MS. It CAN indicate other diseases, but I'm not sure an LP is the only way to see if I have something like Lyme.

2). How bad is an LP these days? My mom had one in the 70s, and she said it was horrific. I've heard it's improved since then, but it still sounds awful. Is it worth it to just do it anyway? Or will I be in excruciating pain for five days, unable to lift my head and go to work?

Thank you for your responses.

[HVAC]

Also you can request sedation if you are really scared. I refused to do it because I am a big chicken. Then they offered me sedation. I do not remember a thing. I remember going to sleep and then waking up and it was all over.

Oh and when you do it get a case of seriously caffinated stuff. I did starbuckes double expresso shots. I drank them the day of after getting home and the next day. It helps with recovery. Also do not get up fast. I went to let the dogs out and popped up fast big mistake. Most people have no issues.

Alex

[brittkl]

Thanks, y'all. This is very helpful. I rescheduled it for next month, but I'll go ahead and get it done, since it seems worth it. Thank you for all your input!

[HVAC]

My LP showed MS. I would not have been diagnosed with out it. It is not as bad as it sounds. I am so glad I had mine.

Alex

[jlserak]

I'm sorry for your anxiety about the LP ;/ I would however like to share my experience in the hopes that it helps. I had the LP about 2 months ago. I had no pain meds/anxiety meds. I simply had local anesthesia at the insertion point. I didn't feel a thing! The whole thing was over realitively quickly. I had to lay flat on my back for about 6 hours and they did give me an IV due to taking so much fluid. However, the next day I was back to work (I'm a teacher.) The choice is yours, but don't let fear of the LP be your deciding factor. Best of luck with it all :)

[Artanis12]

Hi Brittkl,

I just wanted to say, I was like you (and likely others) in that I was utterly terrified of having a LP.  Without boring you on how I got to the point of taking a deep breath and saying yes, I would just say if you do decide to do it, as others have said, it needn't be awful.  But do put your foot down and DEMAND it be done with the flouroscopy and that you be given as much pain/anti-anxiety meds as the market will bear, for the procedure.   The doc doing mine was very good, was swift and accurate, and the position I was in was the most uncomfortable part of the procedure, if truth be known. Afterwards, I was required to lie flat for 4 hours.  I then went home and pretty much did nothing but lounging for the next 24 hours. There were no headaches. So, food for thought.  

Oh, and be sure they take blood the day they do the LP, if you decide to do it, because they will need that to compare your spinal fluid to.  They should know this, but I've found in things such as this, that it's a good idea for ME to know it so I can make sure that the nurses et al, are getting the right instructions from up the chain. Communications sometimes go awry. And sometimes they are mind-numbingly stupid.  When they took my blood on my day, I asked what they were doing (just to check) and they said the doc had ordered several tests, including a pregnancy test.  Considering I had just asked to go to the restroom for the monthly thing, I snorted, and refused that particular test saying, "I'm 51, having a period, and I'm certainly NOT pregnant, so no, you're not."  I understand the covering all bases mentality, but seriously, sometimes doctors can be pretty silly.

Anyway, I'm sorry you're in limbo.  It *****.....

[brittkl]

Thank you, Ess. That was really helpful.

Yes, the MRI was on a 3T machine this time. And yes, I've had blood tests for lupus, thyroid, diabetes, etc. I'm not sure if I've been tested for Lyme, but I can always ask to be tested for it. I know that neuromyelitis optica (or whatever it's called) is a mimic of MS, and there's a blood test for that. It's at least worth getting and ruling it out too.

I think I'm just going to reschedule the LP. Unfortunately, that means I'll have to wait until September, but I guess it really makes no difference. At least then I'll have some time to think about whether it's necessary. Maybe something else will happen before then, too, and it will be a moot point.

I'm just more and more befuddled at this point. Symptoms are pointing to CNS problem, as is the neuro exam, but the only thing that really matters is the MRI, and I've had two that were clear. So, I don't know, maybe I should just take it for what it's worth and go back to waiting.

[essdipity]

Hi there.

An LP doesn't prove anything, but it can be helpful if positive but other circumstances are questionable, such as your MRIs. If you show o-bands, it doesn't matter whether or not you're in a flare, the o-bands will stay thereafter.

This procedure need not be terrible. Mine was done by a skilled doctor under flouroscopy (meaning he could 'see' what he was doing). I drove myself to the hospital, did the prep, had the test, lay still for about an hour as directed, drove myself home, and that was that. End of story. Although one out of seven do get the headache, that means six of seven don't!  Pretty good odds in my estimation.

MS can certainly be diagnosed without MRI evidence, but it's rare. I think too many doctors trust technology more than their own instincts. In reality, 5% do get a diagnosis in the absence of visible lesions. Yes, long odds, but still possible. And remember that before there were MRIs there were lots of MS diagnoses all the same.

The whole clinical picture is what's important. If you showed significant abnormalities during a thorough neuro exam, that should carry a lot of weight.

I'm assuming you've had comprehensive 'rule out' testing for other conditions, and that your MRIs have been done using a high-strength machine (usually this means 3 Tesla) and with good software. That would certainly be likely if you're being seen by a university specialist. So you might be given a diagnosis by a process of elimination. But if you do have MS, lesions will show up in MRI sooner or later.

I guess I'm now back to where I started, which is that to do the LP or not is your call, which you already know :-)  But don't go into it thinking it could show Lyme disease. That's not how Lyme status is tested. If there's a chance you have Lyme, whose symptoms can be much like MS, have that checked out thoroughly. See MedHelp's Lyme forum for lots on this.

ess