I’ve heard spinal taps may be forced on patients simply as they’re cheaper than mri. Should we request mri? And refuse the tap? Obviously the tap is excruciating whereas the mri is painless.
Whoever told you that is WRONG. Read this it will tell all and is the truth. mult-sclerosis.org
Just a few tips on an LP.
The actual procedure is not painful; in fact the only thing you feel is a scratch when the anaesthetic goes in. The actual removal of fluid is just a feeling of pressure if done properly. I must stress if done properly; do not let anyone practice on you insist on someone who is experienced.
It’s after you MAY get something called ‘the headache from hell.’ To cut down the chances of getting this you should lay flat for at least 3 hours do not even get up to go to the loo; use a pan. Drink at least 2 litres of classic Coke, not diet; it’s the caffeine that aids replenishment of your CNS fluid. Being your drinking a lot take one of those bendy straws otherwise the bed will get more Coke than you. If you want a change of drink very strong coffee.
These things will drastically reduce your chances of getting a headache that could last about 8 days. If you have a couple of days off work and rest if you do not get the headache, if you do 10 days off work.
If the headache last more than 10 days you could need a blood patch; especially if there’s a wet patch on the bed in the area of the spine after a nights sleep; this is rare.
Good luck.
George
Well, that certainly has not been my experience. My neurologist had enough from clinical and MRI evidence to have dx me with MS, but said he preferred to have LP results too so that there was as complete a picture as poss on file and the time of dx, so I said OK. It wasn’t compulsory, though, and it didn’t hurt either.
Alison
I don’t see much point in spinal tap. It sounds horrific. And it doesnt cure your ms so there’s no point having it. Mri provides good enough information. There are plenty of stories online of people getting severe pain from it. Nobody can guarantee it won’t be painful.
I know it doesn’t look like i said this but I agree with you 100% but you did not ask that question originally.
George
I wouldn’t think that a blanket decision about which tests to accept and which to refuse is especially helpful. Sometimes neurologists like to check CSF for oligoclonal bands to back up what they get from MRI. Other times, clinical history plus MRI are sufficient to diagnose.
Personally I’d expect that the neurologist would have good reasons for doing a lumbar puncture if they request it.
I had an LP right at the beginning of my MS attacks in 1997. It wasn’t painful, just not a very pleasant experience. And I didn’t have the benefit of sensible advice such as that given by George. So I didn’t drink coke or coffee, or lay down for ages after. But I also didn’t get the headache from hell. In actual fact, my CSF was positive for O bands, and I had 2 lesions but I had only had one MS attack and way back 20 years ago there were no DMDs. So diagnosis was a bit pointless.
Now though, if a test helps the neurologist to diagnose you, then take the test. Follow the advice given by George, many, many people have reported the same advice (and many have not had the benefit of advice and have had a complete killer headache that lasted days). And the sooner you get a diagnosis one way or the other, the better. If you have MS, you can start on DMDs straight away and that may make a big difference to you in the long term. And if you haven’t, then you can start investigating whatever symptoms took you to the neurologist.
Sue
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I don’t agree that neurologists would order spinal tap only if it’s really needed. They don’t think about how painful it is and they’ve probably never had one themselves. Is it really going to change the treatment anyway? Ms is just like every other chronic incurable illness. It’s not treatable very effectively and its just an illness we have to endure for life.
To be honest, “MSSufferer” (and I mean this not as criticism but as advice from my point of view) I really think that you should take a careful look at your priorities and your best interests when it comes to your treatment (ongoing diagnosis?)
SOME people can be and are diagnosed without a lumbar puncture. MANY (the majority) are not. Neurologists are unable to give a diagnosis without having all of the relevant evidence to hand.
DMDs do not cure MS but they do reduce the number of relapses for the majority of people who have RRMS.
No diagnosis means no DMD or a wait of many months or even years before you have enough relapses to allow for a diagnosis.
Yes, relapses can be relatively minor but they can also be catastrophic and life changing. I know, I had catastrophic relapses before I started DMDs and the results have been long lasting and destroyed many elements of my life.
So, why are you delaying the chance of a diagnosis (positive or negative) because of the possible chance of temporary discomfort? My LP was a painfree process but I am aware that some people do have some transitory pain.
Trust me, a temporary headache is NOTHING in comparison to a raid descent to 6.5 on the MS disability scale, longterm vision problems and a major loss of cognitive function.
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I had a MRI that showed demyelination to say it was a shock is an understatement i thought my numbness was due to dental work, i went into a frenzy i won’t lie, they offered me the spinal and i was scared due to what people had said and what i had read but honestly i found it not too bad at all, i drank lots and lots before and after and took it easy for 2 days never got a headache at all just felt a little bruised around the injection point. My results came back clear ( i know that does not mean it’s defo not ms) the relief was immense my chances have reduced greatly by what i understand, i found the MRI worse x
There’s no rule that says no lumbar puncture = no treatment. How cruel. 95% are diagnosed with mri. That’s the majority. Im not being tortured just so the neurologist can say theyve given you lumbar puncture.
Just my opinion, but I wouldn’t have been diagnosed without a positive LP. My evoked potentials were normal and MRI 2-3 possible lesions. I’m currently CIS as only 1 confirmed episode BUT this means I’m eligible for DMTs. The LP was by no means forced on me and I’ve also had 2 MRIs within 3 months both with contrast. I think if I’d declined the LP, my neurologist would have said to watch and wait and come back in 12 months during which time I could’ve relapsed. Obviously DMTs doesn’t mean no relapses but I’m doing what I can do. I think for those diagnosed just on MRI it must be more obvious than in my case.
I won’t lie about my LP in December as I was bricking it. The actual procedure was ok but there was no laying flat afterwards. I did come home, lie down and drank loads. However, I still got a headache, altered hearing, back and hip ache. However, for me it was a necessary piece of the jigsaw.
As I said just my opinion and I’m not an expert being very new to this myself.
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No. No DIAGNOSIS no DMD. However, in most cases a timely diagnosis will require a lumbar puncture. So for most people there is stark choice to be made between a straightforward and relatively minor diagnostic procedure and waiting many months or even years waiting for MS to cause serious further damage to your brain and worrying yourself stupid about the future. IMHO THAT is putting yourself through torture not a lumbar puncture. Time is Brain - you have a finite amount of both.
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My LP was painless, as are many others. As long as you hydrate plenty before & afterwards, & rest plenty afterwards, you may not have any problems, my diagnosis depended on this & an MRI.
My LP was NOT torture, just slightly uncomfortable.
Your remarks seem to be quite aggressive & you’re asking questions that you should be asking a neuro…whether you believe them or not is entirely your choice.
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Look mate just because you’ve had lumbar puncture doesn’t mean you needed it. Read this Magnetic Resonance Imaging (MRI) Scan for Diagnosing MS No lumbar punctures needed. It is needed in a small minority. Stop giving wrong information. If you want to feel pain have a lumbar puncture. If you can’t bear to suffer, don’t have it. Ms is an incurable condition. Treatment is not very effective and has side effects. Lumbar puncture won’t change any of that
What showed up on your MRI Mssufferer ?
[quote=“smurf69”]
Just my opinion, but I wouldn’t have been diagnosed without a positive LP.
[/quote] you deserved a lumbar puncture because you were in the 5% who have few signs on mri. Your case is not typical
[quote=“sue1”]
What showed up on your MRI Mssufferer ?
[/quote] havent had one
I presumed you had sorry, just with your name and you are so well read up on it all i thought you would have started testing, sorry it was a blonde moment and i should have read the whole thread
To be perfectly honest MSsufferer, I don’t think you are terribly well informed. It doesn’t appear to me from your multitude of posts on this subject and that of Uhthoffs sign, that you’ve had any tests for MS at all. Therefore you cannot rightfully describe yourself as an MS ‘sufferer’. Or even as a person without MS.
You don’t seem to understand the well intentioned replies to your posts. You come across as rather aggressive and utterly dismissive of anything told to you by any person who disagrees with you.
Todays disease modifying drugs are not all useless, many, many people live for a lot of years post diagnosis with few symptoms because they are on a good DMD.
You can only be prescribed such a DMD if you are prepared to see a neurologist and have a physical examination, the consideration of the neurologist of your clinical history and such tests as the neurologist and you agree that you need.
Sue
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[quote=“Ssssue”]
Therefore you cannot rightfully describe yourself as an MS ‘sufferer’. Or even as a person without MS.
You can only be prescribed such a DMD if you are prepared to see a neurologist and have a physical examination, the consideration of the neurologist of your clinical history and such tests as the neurologist and you agree that you need.
Sue
[/quote] I am suffering ms symptoms so the name is appropriate.
You obviously don’t understand how the nhs works. I am already on a 3month waiting list for a neurologist. That’s only an initial appointment. Who knows how much longer for an mri or even if they’ll agree to do one?
In the meantime I can only continue to suffer. That’s the purpose of this forum. It’s for people who are waiting for proper medical diagnoses.