MRI and Lumbar Puncture

New diagnosis and before diagnosis
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Hi, I posted on here 4 years ago when this all started, just all the usual symptoms, pins and needles in left leg face and head on fire, dizziness, memory problems, slurring speech, numerous UTI’s, elastic band feeling around left leg and numerous more weird stuff. I went for a MRI scan which showed everything was normal and after a discussion with the Neuro we decided not to go for a LP as I was quite scared of this. Over the years my pins and needles have never went away but I have never felt as bad as I did when all my symptoms first appeared. In May I lost around 10lbs within a couple of weeks without trying and have had some of the symptoms back again including extreme fatigue. I’m never in pain apart from a couple of times my back has been playing up. My GP sent me to see the Neuro again and I was lucky enough to get a very nice lady who was very thorough, in fact I was in there for around an hour, she has put me forward for another MRI but told me that this time I MUST agree to a LP also. My MRI will include the spine this time, last time it was only the head. I am very claustrophobic and worry about being able to stay inside it for so long, I believe it takes around an hour? I am even more worried about the LP so any advice regarding this would be appreciated. I am scared of the headache and in case anything goes wrong as I had severe back pain growing up as a child and wonder if this will trigger it off again. I wasn’t allowed an epidural whilst giving birth because of this. My local hospital is Aberdeen so wonder what MRI they use there. By the way, this site is such a help to people the advice and encouragement is lovely to see. Thanks in advance.

Linda

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Hi Linda,

I am concerned about this “MUST agree” thing.

There is no medical procedure you MUST agree to. You can refuse anything at all, for any reason - and it doesn’t even have to be a sensible one - although I think not wanting an invasive procedure that is still not a definite test is quite reason enough, without having to justify it.

I do understand her reasoning that it could be very hard to get any further without an LP - especially if the second MRI still does not cast any light.

However, it is definitely possible to be diagnosed without a LP, as I have been. So have a number of other people here. Yes, we’re in the minority, but it shows LP is not compulsory for diagnosis.

So if you’re quite sure you don’t want it, you need to speak up, and not be bullied. As far as I know, they are not allowed to deny access to one test (e.g. MRI), because you wouldn’t go along with another, as that is interfering with the patient’s free will, and is unethical. You cannot make care conditional on the patient going along with everything that is proposed, as: “Do it, or we’ll drop you!” is not a proper choice at all.

At the very least, I would want to see what the MRI says, before agreeing to the LP. If it still shows nothing, then LP may be your only chance of finding an abnormality that would support an MS diagnosis. But IF things have changed, and your MRI now shows very clear evidence of what looks like MS, you might question what extra value the LP would bring. In particular, what if it’s normal/negative? Would that mean it overrides the evidence of the MRI, and you still can’t be diagnosed?

I’m not saying there are NO reasons for having the LP. After weighing everything up, you may decide it’s the best chance of getting answers. But always remember there’s no: “MUST”. It’s the patient’s decision, not the neurologist’s.

MS is very rarely a life-threatening illness, so declining an LP does not place your life in danger - and even if it did, it would still be your choice. Medics can advise or recommend; they cannot order.

Tina

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You already know that, if you do have MS, that you are one of those who is tricky-to-dx. Maybe that is why the neurologist is so clear that there’ll be no messing about this time: she is determined to get to the bottom of things, so she wants all the information she can get. So far, so encouraging! Did you talk through with her the relative risks and benefits of an LP with your particular medical history? If not, I would be on the phone to her secretary, explaining why you could do with a telephone chat with the neurologist to make sure that she is fully in the picture. If she knows about your back trouble, she might take a different view about the need for an LP. If she does know, and has thought about that and still thinks you need an LP anyway, well, that tells you something about how important she thinks it is for you, and that is another piece of info for you to mull over.

No one is going to make you have an LP, by the way.

Good luck with it all.

Alison

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Meant to say, if you know that the MRI scanner is likely to make you anxious, talk to your GP and get him or her to prescribe a sedative for you to take on the day - it is a very common problem, so there’s no need to soldier on without a bit of help. You have enough on your plate without putting up with avoidable sources of anxiety.

Alison

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Hi Linda, I was about to say the same as Alison has about asking for a sedative for the MRI, it should make things more bearable for you. Check on the time it’ll take too, might be as long as you’re thinking. Maybe I was lucky, but when I had a LP I felt absolutely no pain & had no headache or any after effects, but if you’re at all worried please don’t feel bullied into having one, Tina has explained it perfectly & it’s your choice.

Good luck with everything

Rosina x

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I meant to say i never had ab MRI longer than 25 mins and this included head and neck. I used to be so scared but just try to relax and it becomes almost like lying down for a noisy nap. As for LP, i never had a headache.

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Mri scans are quite enclosed and if you do have anxiety about it then a sedative shouldn’t be a problem for prescription.

lumbar puncture tests show if anything abnormal is in your spinal fluid which could narrow down the possibilities of illness bit the mri is the big one. I have refused an lp and have had diagnosis but my mri and past symptoms were pretty compelling.

You have the right to reject any treatment or diagnosis tests. It’s your body.

I hope the mri gets to the bottom of things to save you the distress and that you feel better soon

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My MRI was 60 minutes but it didn’t seem that long, it was head neck and spine was ok and first time too, mine did show inflammation but neuro still wanted me to have vep and LP as other poster said I also had no pain I had 3 needles to numb me was just a scratch and then needle for LP.

I felt something pressure but as soon as the doctor saw he moved the needle and it was all good, lied down for 45 minutes then drank water and went for my vep back was a little sore for a few days but that’s all.

hope this helps x

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Hi folks

Sorry I haven’t replied to your advice but I had noticed that you need to post 3 before you were allowed on so I didn’t think I would get on and just noticed all of you taking the time to reply to me.

Thank you so much for the helpful advice about the MRI and LP. I am just getting on with things at the moment as no appointments have arrived, I guess I will start getting really nervous when they do arrive. Hopefully the MRI will come first and then I can decide if I am going to go ahead with the LP. The minor back pain I have grown up with is in fact Spina Bifida Occulta (mild form) and I have been free of the pain for a while so that is the main reason I am hesitant of going for the LP. I am going through quite a stressful time at work and wonder whether the stress could be bringing on the symptoms.

I notice that people say drink lots of coke for the LP, is this before or afterwards, or both?

Has anyone on here had a negative MRI then a couple of years later had a positive one. My family tell me that because my first one was fine then there is nothing wrong but I don’t make up these things. Also because of the stress and anxiety I am feeling my doctor put me on beta blockers and since then my tremors have subsided so I also wonder if it is all just stress.

Thanks again and sorry for taking so long to acknowledge the time out you took to reply to me. I will post again when the dates arrive at my door!

Linda X

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Spoke too soon, MRI appointment arrived today for next Friday 19th December, which I think is very quick, its for Spine Cervical and Head, also yesterday I received another neuro appointment for next May, is this to give me the results as that seems a long time to wait?

Linda X

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That is a long time I waited 2 months for my LP result mri I had in May and had results 2 weeks later, the doctor who did my LP said not to drink coke lol, so all I had was a glass of water then 40 mins later I went for vep test, when I got home I did have like 2 cans of coke but had no headache just a little sore in my back kind of like bruising it really wasn’t too bad, I would ask neuros Secretary to send you a letter with results.

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Hi Linda

As a newly diagnosed MS-er, all I can say keep yourself hydrated after your LP, as that will keep a headache at bay. I wouldn’t drink Coke though, just stick to water or squash if you can. And you don’t have to have a LP if you don’t want to, but it may help with your diagnosis, and bring it a bit closer. There are certain things the neurologist is looking for, and you can’t really ‘jump the queue’, if you like. It doesn’t work like that, unfortunately. I did everything they asked me to do, just to move forward and get a diagnosis. My symptoms started 2 and a half years ago, and I’d had drop foot twice, unpaired evidence of inflammation in my spinal fluid (from the LP), evidence of inflammation of the spine, and more recently inflammation on the brain.

My spinal & brain MRI took over an hour, but just try and lie there like you’re on a beach sunning yourself if you can. I wish you the best of luck, and hopefully an imminent diagnosis will be with you! Try not to worry!!!

All the best - Big Hugs!

Alison xx

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Thanks Alison I will do my best to think of lying on a beach. I will keep you posted as to how it goes.

Thanks again to everyone for your replies.

Linda

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Picked this up a bit late, Linda, but Alison is quite right.
You can refuse to have an LP if you don’t want to.
You have an absolute right to do this.
This quote is from P7 of part 1 of the NHS Constitution:

“You have the right to accept or refuse treatment that is offered to you, and not to be given any physical examination or treatment unless you have given valid consent. If you do not have the capacity to do so, consent must be obtained from a person legally able to act on your behalf, or the treatment must be in your best interests.”

The MRI (should be behind you now) is sufficient to Dx MS. The LP is just a case of making quite sure.

Negative MRIs can mean that they scanned the wrong area, or that the scanner was not powerful enough.

Geoff

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Hi Geoff

Thanks for your input. I had my MRI last Friday and to all those out there that are claustrophobic like me, it wasn’t bad at all. When I told the girl I was claustrophobic she gave me music and a mirror which allowed me to see outside the scanner which helped a lot. I definitely wouldn’t be scared next time, if I ever need one.

The scanner was 1.5T and my MRI was with contrast of the head and neck, not a full body which I was expecting. It took around 35 minutes. I am not sure if this scanner is powerful enough but it’s all I was offered.

I am still waiting for the Lumbar Puncture appointment and I am still wondering whether to go ahead. I was advised that the results for the MRI would take a few weeks so I will base my decision on the results of the MRI.

When I was with the neuro I didn’t mention that I have a sore head at the crown all the time, it feels like someone is pulling my hair, I have had this for a few months now but didn’t mention it at my appointment as I didn’t think it was relevant. Has anyone else had this headache?

I will keep you posted when my results arrive.

Thanks

Linda

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when my wife had her LP she was advised to drink coffee as the caffiene helps relieve any pain quicker. she did have a headache but it was a day or so after the LP and not the same day

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I had a LP and was advised against coke, they just made me drink water and 40 minutes later I went for VEP I was tender but not too bad got home had a can of coke that’s it no headache at all, I was dreading this the most and it was easier then my MRI, people worry a lot about it but it was okay don’t refuse it because your worried as some neurologists won’t give a diagnoses until more then one test comes back positive I know I still needed LP and VEP even though I had brain lesions.

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Hi,

im waiting diagnosis confirmation. This is my story so far…

had some quite worrying numbness 2yrs ago, went to GP and got sent for cervical spine MRI? Was referred to neuro because something was seen, by the time I saw neuro all symptoms had gone and I was back to normal, he told me I had a spot of myelitis that it was basically resolved and won’t bother me again!

fast forward 2yrs to July 2014 and I’m in holiday when I notice numbness again, it disappeared by the end of holiday, then returns in sept when I decide to see GP! GP refers to same neuro! This episode comes to an end after a couple of weeks when I’m about a month away from neuro appointment! Then end of October I get a pain on my back, burning round ribs to under left breast! Neuro appointment is 3weeks away!

i see neuro on 24th nov 2014 by which time I’ve been off sick from work for 3wks, symptoms getting worse! He examines me takes history and obviously we talk about myelitis 2yrs previous. He tells me this ‘points’ toward MS and arranges urgent brain and full spine MRI.

i had MRI on 10 dec so quite quick! A week later I wrote to neuro and expressed concern that it was still off work and symptoms preventing me from doing quite a bit and could he please consider steroids!

on Monday after Christmas my GP phones me and says could I come to the surgery! He has a letter from my neuro in response to my letter, it explains that the MRI hasn’t been ‘reported’ yet but that he has personally had a look at it! It show inflammation in cervical and thoracic cord and 1 or 2 peri ventricular brain lesions! Consistent with MS, I get my steroids and started th yesterday. So great improvement yet! Neuro wants to see me to discuss LP to strengthen diagnosis?

im confused, I’m scared? I’m trying to console myself I’m that this can’t be PPMS due to problem 2yrs ago?

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Well results are in and MRI of head is normal, neck shows wear and tear consistent with age so it definitely can’t be MS, the Secretary wanted to organise my LP and I said that I had changed my mind as I didn’t see the point as the MRI was clear. I’m now having second thoughts but what can the LP show if my head is clear. I’m very confused as I am not imagineing all my symptoms, perhaps it is all stress, surely not! As much I am relieved I am also feeling like a hypochondriac I just want to put a label onto what ever it is so that I can deal with it!

Linda

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Hi Linda,

I spent 2 month with MS symptoms (Nystagmus, vertigo (Caused by nystagmus), severe memory problems etc etc…) seen several doctors all where puzzled but none referred me to a neurologist, except one and he asked my to go at Montreal Jewish hospital. There Neurologist are top notch.

First Day:

-Neurologist did some visual testing on me first finding what my nystagmus was (Very frequent in MS patient)

-MRI (Had 20+ lesions in brain and spine)

-Did LP just to be certain it was MS (took them more than 1 hour and 35 puncture to extract my precious brain juice :slight_smile: ) I felt every second of very puncture since I never numbed …and apparently my scoliosis complicated things hehe

Next Day:

-Had my first corticosteroid treatment !

-Its not magic, symptoms weakens gradually week by week. took me 3 weeks .

2 Month :

Had my neurologist appointed to me and he asked me to choose between 5 MS drugs, I finally settled for Copaxone since it has the least side effects !

Altho not one test is enough to diagnose MS, it is more a combination of many test that gives the diagnostic of MS. and even that is not bullet proof MRI and LP can turn negative and you can still have MS… I was lucky in a sense ! If I was you I would do the LP test !!