Hi there, this is my first post I haven’t actually been diagnosed with ms yet but have had two MRI scans 2 on the brain & one on the back. My neurologist wanted me to have a LP which I’ve politely refused, but has booked me in for one anyway. The thing is the idea of it has given me great anxiety I was just wondering were I stand in with the situation is it ok if I reject it again? Thanks
Hello Mat
The first question is whether you have been given the results of the MRI scans. If you have and there are what is known as ‘demyelinating lesions’ the lumbar puncture may not actually be needed to make a definitive diagnosis, either that you have, or have not, got MS.
I really think you need to talk through the process you’ve been through with someone who’s seen and understood the results of a) the MRI scans b) whether you’ve had more than one MS type ‘relapse’, or continued observable progression and c) what the neurologist has discovered from your physical examination (I assume you’ve had one?)
In order to diagnose MS, the neurologist uses what’s called the McDonald Criteria (see McDonald criteria | MS Trust ). If you read through the different points on the criteria, you can see that sometimes a lumbar puncture is essential for diagnosis. Other times, it’s just a ‘belt and braces’ useful but inessential part of diagnosis.
A lumbar puncture isn’t a pleasant test to undergo its true. It bears a small element of risk and also side effects. But the side effects can be often be avoided by following certain advisable ‘rules’: drinking plenty of full sugar cola (coke) or coffee, and staying laid down completely flat for at least 2 hours after the test. (See Lumbar puncture | MS Trust )
I suggest you speak to an MS nurse if you have been allocated one. Otherwise try phoning your neurologists secretary and ask for a telephone conversation with the neurologist. Talk it through with someone who knows what tests you’ve had and what results arose from those tests.
Best of luck.
Sue
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Mat, as far as I am aware you can refuse treatments, but any consequences will be specific and be between you and your medical team. I was terrified by the thought of a lumbar puncture but I did not feel anything beyond pressure, and had no nasty consequences. I suggest that you discuss your anxiety with your neurologist so that between you the best course can be worked out for you.
Good luck
Mick
I have just seen Sue’s reply and as ever the advice is sound. M
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Of course it is your choice to accept or reject any test or treatment offered to you. There are very strict and well-established laws about that sort of thing, and quite right too.
If you don’t want the lumbar puncture, then cancel the appointment so someone else can have it. And talk to your neurologist about it. He/she isn’t going to be offended because you don’t want an LP. He/she might even manage to change your mind if a better case is made. My advice is: keep an open mind, but absolutely do not feel forced into doing something you don’t want.
Alison
Hi Mat,
I get panic attacks in situations I can’t get out of. Spoke to my Dr and was given diazepam to get an MRI. Wonder if you can get some for LP?
Worth asking.
Jen
You dont have to take the tests if you dont want.
My consultant always asks first and explains why he thinks the tests are needed.
When I was going through the diagnosis stage I decided to take every test that was offered, simply because I thought it was best to cover all bases.
The lumber procedure itself wasn’t that bad, but a few hours later I had the worse headache I have ever experienced.
Laying down and drinking fluids do help though, 24 to 48 hrs later I was fine.