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To lumbar or not to lumbar...that is the question!

Hi there,

I’m new to the forum and have been reading lots of posts over the last month or so. I was hoping some of you might be able to offer some advice. I’ve been having symptoms over the last couple of months…started off with shooting pains in big toes, then burning pain across top part of my back, this moved to cold feelings down my legs, slightly wobbly legs at times and now the burning is in my lower back and left side of my body. I’m also very tired but that is probably heightened by working and having 2 small kids! Saw GP, had bloods done and got referred to a neurologist. Luckily I have got private healthcare through work so it’s all happened faster than expected which I’m so grateful for. I’ve had an MRI scan which has shown a small white patch in the brain and also a larger one in the cervical spine. Neurologist has taken more bloods to check immune system and has prescribed some meds for pain (amitriptyline) but I’ve not started them yet. He said MS still remains on the differential for a possible diagnoses. He said that I could go for a lumbar puncture and VEP test or wait 6 months for another MRI. How do they diagnose MS? Would the lumbar puncture confirm it or do you have to wait for an MRI to look for more lesions anyway? I know that lots of people are stuck in limbo for a while so that’s quite common. Can anyone offer any advice on this stage?

Thanks for your help!

hi lilypad

whilst a lumbar puncture was never on my bucket list, i had it done willingly to help speed up my diagnosis.

make sure the doctor who carries out the LP is experienced.

it feels like an injection (just a sharp scatch as they say).

the process itself doesn’t hurt.

lying flat for at least an hour is difficult but do it to avoid the extreme headache afterwards.

drink caffeine drinks eg non diet coco cola,

take a bendy straw to avoid wearing it!

if, like me, you are unable to lie flat because your legs roam around, ask for a foam wedge to put under your knees.

be a brave soldier

carole x

Have the LP.

Why ?

Because the combination of the MRI you have had and a LP can lead to a Dignoses.

Because without a proper Dignoses you won’t get DMD

​it sounds like you are being given the option to wait 6 months & have another MRI on the basis that there will be further lesions. Which will lead to Dignoses.

​why risk waiting 6 months for further damage.

your dissision. But LP is not that bad, I had an epidural during child birth & I have had a LP. I Would never have an epidural again, but the LP didn’t feel like a big deal. (I drove myself home after)

big hugs at this difficult time, I really hope I haven’t shared my view too strongly. And it is only my view.

Ps. I have been on a DMD for 8 months months & the only relaps I have had in that time was so mild I chose not to have steroids (I didn’t get on well with them first time) I also did not take time off work (got close).

pps. I have been reading this fourum for some time & those who are waiting for proper Dignoses seem very very stressed.

Also with the amended McDonald criteria 2017 a positive LP can be used to give a diagnosis whereas before it would have been classified as CIS if only 1 episode

https://www.nationalmssociety.org/About-the-Society/News/Updated-McDonald-Criteria-Expected-to-Speed-the-Di

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Like many others, I agreed to the lumbar puncture just to end the suspense - to get all the faffing around ended and to go back to my old life. It wasn’t anywhere near as bad as I’d built it up in my mind. Take them seriously about laying down and drinking something with caffeine in afterwards, and you’ll be fine!

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Thank you for your replies. I’m edging towards getting it done I think as I’d rather feel a bit closer to finding out if it is MS or not. (Even just to get my head round it a bit more!) reading this forum has been really useful so far and a great source of information…thank you!

I guess everyone has a different experience but would you be able to go back to work the next day do you think? (As long as you didn’t have an almighty headache!)

Hi

There’s no reason not to be able to work the next day so long as you don’t have an almighty headache that is.

And in most cases, you don’t get the headache from hell. Just make sure you stay laying down flat for a couple of hours after the test and drink plenty of caffeinated drinks. Mostly people advise drinking full strength Coke with a bendy straw (so you can stay laid down).

Personally, I didn’t have the benefit of this advise (it was 21 years ago so in the Dark Ages) And still didn’t get the headache.

And occasionally people take the advise but still get felled by the head from the 11th circle of hell. But that is rare.

It’s a good plan to go for the test anyway. If you get a negative result it doesn’t automatically mean you definitely don’t have MS, since only about 80-95% of people have O bands in their CSF it just makes it slightly less likely. Of course, if you get a positive result, it’s likely that you would be diagnosed with MS.

But then at least you’d be able to start disease modifying drugs (DMDs) sooner than waiting for another MRI. And the sooner you start DMDs the better if in fact you do have MS.

Have a look at https://www.mstrust.org.uk/a-z/lumbar-puncture It will give you more information about the LP.

Sue

Hi Lillypad, have your symptoms improved/subsided at all and how long did this take?

Many thanks

Well, I’ve had the results back for lumbar and VEP test and they didn’t show up anything so that’s good. But the symptoms are all still there and the amitriptyline isn’t doing anything. I’m going to try a different one to see if it helps to manage the symptoms and go back for another MRI in 5 months. Has anyone been diagnosed MS by changes in scans and symptoms? It’s a strange feeling as I’m still none the wiser in some ways… it’s hard just playing the waiting game! Symptoms are just getting worse if anything so that’s annoying!

I chose not to have a LP. My VEP was negative and I was diagnosed from MRI results. Sue