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Not sure I want/need a lumbar puncture

Hi. I’ve had an MRI that showed an area of demylination. The consultant has asked for a spinal MRI and a lumbar puncture. What will the lumbar puncture prove that the spinal MRI can’t? If it isn’t MS what would the demylination mean if anything? I don’t want to go through it for nothing and I just went for the headaches that turned out to be my autoimmune hypothyroid levels suddenly going high. Thanks.

Hi Dextersmum amd welcome to the site happy2

First of all you don't have to agree to having a lumbar puncture done - it's an invasive procedure and therefore the decision is entirely yours. Lots of people opt not to have it done but lots (like me) decide to go for it. The thing about lp's - which I still find hard to get my head around - is that a negative result doesn't necessarily mean that it's not ms. But on the other hand other things like infections can also be ruled out (or in) from the results too.

I didn't find the lp painful at all. If anything it was more of an uncomfortable process. What happens is the doc numbs the area with local anaesthetic and draws off some fluid from the spine (CFS). This is then tested for oligoclonal banding - two or more of which could mean ms activity is present. They also test the levels of white blood cells too. Someone with ms can have up to 7 times higher than normal white blood cells - but going on the white blood cells alone, a high level could also mean that an infection is present as opposed to it being ms. I think the figure is something like 95% of people with ms have two or more oligoclonal bands.

In ms 'rogue' cells manage to get through the blood brain barrier and damage the myelin, which is the sheath like protection which lines the nerves. Damage done to the nerves is demyelation and is what causes the confusion when messages are sent from the brain to various parts of the body - resulting in sensory pain etc etc.

I'm not at all sure whether I'm explaining this well enough and really the lady who has a far better way of explaining things of this nature is Karen (Rizzo) - who is simply fantastic at it happy2

The upshot is D-mum is that an LP can sometimes speed up the process of receiving a formal diagnosis of ms or ruling it out. For me it was the final piece of the puzzle that led to my diagnosis but it's not always like that for everyone.

If you do decide to go for the lp then the trick afterwards is to rest. Stay flat on your back and keep drinking caffeinated drinks - full sugared coke and caffeinated coffee - as well as water. This helps to avoid the monster headache (which I didn't get). A straw is also the best thing to drink through when laying flat on your back...

The ms trust website explains the lp procedure and what the results may mean really well - just google the ms trust or lumbar punctures. 

Whether you have the lp done is entirely your choice. There have been lots of posts made in the past about lp's so it may be useful to you to have gander at those too.

Good luck - will you let us know how you get on?

Take care

Debbie xx

 

Having a spinal scan and an LP is pretty standard practice when a neuro suspects MS, but there aren't enough lesions on the brain to be sure.

 

At the moment, your history and clinical exam must make it look like you have MS. Your brain scan supports this, but doesn't confirm it because the minimum number of lesions required to diagnose MS is two (which have to be in typical areas for MS). So the neuro needs more evidence. The best two sources of evidence of MS after brain MRI are spinal MRI and an LP.

 

A problem with spinal MRI is that it isn't actually very good - mainly because the spinal cord is only as thick as a thumb, so it is easy to miss lesions in it. Your neuro is probably opting for an LP to increase the chances of getting evidence.

 

What will the LP tell him that the spinal MRI won't? That depends entirely on whether or not your spinal MRI is positive. If it is, then you could argue that the LP is unnecessary. If it is clear, then a positive LP will confirm that the brain lesion is due to an MS attack. If it is clear and the LP is negative too, then the lesion in your brain is less likely to be because of MS.

 

If you don't mind things taking longer, the best thing to do if you don't want an LP would probably be to get the spinal scan done first and wait for the results. Before you do that, you might want to check with your neuro that he will diagnose without the LP if your spinal scan is positive - he may have other reasons for wanting the LP (e.g. to rule out other conditions).

 

Btw, they use much finer needles than they used to for LPs which means that the vast majority of people don't get a headache these days. Drinking caffeine-rich drinks and lying down can help too.

 

If it isn't MS, then there are actually quite a lot of other possibilities for what caused your lesion including things like vitamin B12 deficiency, vitamin E deficiency and genetic conditions. There are also quite a few people who get a one-off attack of demyelination and never have another one.

 

Hth!

Let us know how it all goes!

Karen x

Thank you so much for those helpful replies. I shall be brave and do it!

aww thats great news..good luck and do let us know how you get on..:-)