lumbar puncture uncertainty

Hi, I wonder if anyone could advise me on this. Since last Oct/Nov I have had severe burning, numbness in my legs, lightheadedness, spaced out with balance issues as well as brain fog. Saw a neurologist in Feb who was really excellent. I have been for a MRI which had neumerous lesions. Now off for a lumbar puncture and visual potential tests. My question is this… in the last few weeks apart from ongoing pins and needles, burning and intermittent lightheadedness I have been feeling much better which is great. However, as I feel better will a lumbar puncture still show oligocolonal bands?, or do you need to be in the thick of the symptoms to show these?. Really would like to understand the process and also don’t want the severness of the symptoms ever to return. Dealing with the burning in my legs is bad enough. Any advice anyone?? Thanks for listening.

Kate

Hi Kate

As far as I know, the lumbar puncture will show oligoclonal bands whether you are in the midst of a relapse or not (assuming you have O bands and that you do have MS). Have a look at https://www.mstrust.org.uk/a-z/lumbar-puncture#howitworks

​I think that the LP together with the VEP and the MRI together will give your neurologist all the evidence needed.

Best of luck

Sue

Thanks Sue,much appreciated.

Kate

Hello Kate,

I’m going to tell you pretty much the same as Sue has.

Whilst I’m certainly no expert, I’m fairly sure that O-Bands are either there or not there, they don’t come and go.

It sounds like your neuro is being pretty thorough and doing all the important tests, the three you’re undergoing now are the main ones. I expect you’ll have some blood tests too, if you haven’t already had them. There’s a whole bunch of other conditions with similar symptoms that have to ruled out.

Most people find it an annoyingly slow process.

Hope you get some answers soon.

Ben

Thanks for replying Ben, it is a minefield for sure. Would you know if a neurologist can diagnose MS when they have found lesions in various areas of the brain as well as positive visual potential and lumbar puncture or would further MRI’s be needed? I understand that they have to have new lesions over space and time but if everything is positive then would a diagnosis be possible. Sorry, just wondering. I just have to wait but my brain is so completely overwhelmed and I am so anxious about all of this. So frightened of symptoms getting worse and when this might happen too!!! Anyway, thanks again.

Kate

I’ve had various MRI’s over the years. DX’d in 2010 and have had 2 MRI’s since, with contrast, showing new lesions. I had the evoked potentials test in 2009. Last week the neuro said he wanted to do an LP too, to which I said if you can rule out MS, you can do it, otherwise I see no point as I’ve been dx’d and have new lesions since dx.

The procedure itself isn’t too bad, it’s just the violent headache afterwards that put me off after I had one at 7 years old.

Good luck with it all

To be honest Kate, as to what evidence a neuro needs to diagnose MS, it seems to depend on the neurologist and / or the local policy. Some people get a diagnosis with just one attack and one MRI. Others are made to wait. It also might depend on the number and location of the brain lesions. So, although it’s a scary time, and you want the diagnostic process to be done with asap, you also want it to be done right. And we are all to a greater or lesser degree, dependent on the usual process of the neurologist concerned and of course, the old ‘Postcode Lottery’!

Sue

Really appreciate all your support and advice. Off for the LP on the 28th April so will let you know how I get on. Thanks again.

So appreciated.

Kate x

Kate, I understand how you feel, it’s a scary time and you just want an answer, but you’re going to have to be patient. I’m afraid there’s no way of hurrying it, it’s just not a simple diagnosis, and none of us here can predict what your neuro’s going to say or when she’ll say it.

Hang in there, and stay on the forum, you’re amongst friends here who have all had to go through testing and diagnosis, and most of us got stressed about it. I know I did.

Ben

Hi,

I had a Lumber Puncture a couple of weeks ago, I had to lay down for an hour or so after and I got no headache, so make sure they dont get you up straight away. My friend was very ill with headaches because she got up straight away. I think most places get you to lay down for a while now.

Good luck

vicki

Thanks Vicki,

as a midwife I am not frightened of the LP having been involved in many other proceedures , its just the waiting and uncertainty of results. Feeling really down today and worried about it all as I am now off work and so difficult as no one can actually see any symptoms. I suppose it’s the same for so many. Great site to have questions answered. Really appreciate everyone’s comments.

I am waiting to have an lp too Kate. My neurologist said I will be kept there for FOUR hours to get over it. He explained it only takes about 5 minutes but you need to rest afterwards.

Hi guzlover, I would also advise you to lie on your back for as long as possible, also to drink some coke or a strong coffee before hand as caffeine can really help with any issues of headache. I am also having a visual potential test that day and worried they are going to get me up too soon. I have to arrive at 2 and the ward closes at 6pm!!

Kate

Thank you for the tip about drinking coke before hand. I am so glad I found this forum :slight_smile: Such a worrying time for us before we get diagnosed.

Actually people now say drink fat coke afterwards, as you should be laying down for a good long while after, take a bendy straw.

Personally, I had mine such a long time ago and was given no such useful info, I did neither (I don’t think, I can’t remember exactly). But I know I didn’t get a headache. So, it seems some people get killer headaches which can be averted by laying down and drinking full sugar coke and / or coffee, while others don’t get the headache no matter what they do.

Sue