Ive had the MRI - cant remember exactly what is said but a few white lesions on the brain one - but the spine was very faint.
so advised a LP. Im scared of having a blood test (which I obviously have had to have) so not really looking forward to LP (which I haven’t yet agreed to).
thinking Id rather wait and get another MRI in a few months and if the spine has lesions on then Ill get a diagnosis. Back with the neurologist in March - she has been great - I was convinced I didn’t have MS, it was her that went down the MS route and now I think she is right (PPMS).
So for those who didn’t lie down for hours after their LP - is that because the hospital were chucking you out?!
Absolutely not! The doctors and nurses when I had my LP were VERY insistent that I stayed flat on the bed for at least an hour afterwards. The problem was ME I can’t stand lying flat at any time and they would have had to tie me down to keep me there.
Even so, they would not let me leave until enough time had passed to be sure that there were no immediate problems. I left with strict instructions to take things easy at home for the next 24-48 hours.
When you have an LP it is quite a long process (observation not the actual LP). Most (all?) hospitals admit you as a day patient for an LP rather than deal with it as an out patient procedure because it is not a quick in and out procedure and you are there for as long as is needed.
What I think most people on here mean when they say they didn’t lie down for hours relates to the time after they were discharged. A lot of people don’t want to, don’t feel the need to or just can’t lie flat for 2 days after their LP!
Everybody is different of course but in my case my LP was completely painless (less so than a lot of blood tests I have had) and I had absolutely no side effects. I was glad that I didn’t have to go to work the next day (had it done on a Friday) but that is because I am a lazy mare. The worry about what it would be like was far, far, far worse than the actuality.
Lindamc I wrote a long response to your post but my computer ate it.
In brief, IMHO delaying possible diagnosis because you are reluctant to have an LP is understandable but potentially very dangerous. You are playing Russian Roulette with your brain or, at least, your mental well being. Sorry to be brutal but that’s how I see it.
You are waiting for more damage to show up. More DAMAGE. It might be minor damage but equally it could be catastrophic damage that puts you in a wheelchair etc. Damage that could have been avoided by prompt diagnosis and treatment.
Equally you are putting yourself in the situation where you going to be in a continual state of worry were every twinge you feel could be heralding life-changing symptoms. That’s no way to live your life.
All so that you can avoid the minor discomfort of a LP.
I agree with Boblatina about the need to have the tests which your neurologist clearly thinks are necessary. Also, the need to lie down after the LP.
I didn’t specifically lie down after mine because I was never advised to, however, I was an in patient at the hospital where it was done so chances are I was lying down anyway (can’t remember, it was 20 years ago).
The LP actually hurts less than a blood test, so I really wouldn’t worry about that. Also, as you’re laying down on your side, you don’t see the needle or any other equipment. It’s not a very pleasant test, but it doesn’t hurt.
I actually can’t understand why there’s a reluctance among people to have a lumbar puncture. Diagnosis (or otherwise) is what you see a doctor for, so why wouldn’t you have a test which he/she recommends?
I also don’t understand why your neurologist thinks not only that you have MS, even though you’ve not officially been diagnosed with it, but that it’s primary progressive at that. It seems a bit premature to decide what kind of MS you have before you’re even diagnosed.
The majority of MS diagnoses are initially at least relapsing remitting, unless there is very clear evidence of progression from the outset. If you are wrong about the type of MS that you are diagnosed with (assuming you are that is), and you are offered disease modifying drugs, then the delay in diagnosis could as Boblatina spells out = more disability.
Hopefully you’ll not wait for more disability before having further tests which will help your neurologist to properly diagnose you.
I am shocked reading some of your posts at just how awful my LP seems to have been handled. I had read previously (on here mostly) about hospitals keeping you laying flat for a period of time afterwards and so that was what I was expecting.
My LP was unpleasant, and required quite a few attempts to ‘hit the spot’. It was done as an out patient and I was surprised and taken aback that I was led out by a nurse immediately after it was over and sent on my way. I was not even given the advice to lay flat, keep hydrated, take things easy. Thank goodness for this forum so I was aware of this. I guess some health authorities are better than others.
PPMS - because i fit all those symptoms eg slowly getting worse for about 5 or so years - never had a relapse, just thought it was age and the fact Id broken my leg previously - saw the doctor when it got worse with drop foot - and im 49
so fit for PPMS - although it could still be something else (but not remitting MS)
Everybody is so good at writing long responses on this site!
no - i dont have to give a decision on LP until im back at the neurologist (next month) - so time to decide yet.
And you only have to have 3 ticks on the mcdonald criteria list before you are diagnosed - i currently have two. And it is possible to get the third tick with another MRI. Current research is that you shouldn’t have to have the LP as MRI are so good these days.
But will go for it if it get me a quicker diagnosis…
Spinal puncture is a outdated 19th century technique used before mri came along.
At at time of increasing budget cuts it is standard practice for hospitals to cut corners to save money at the expense of patient safety or comfort. I’m currently on a minimum of 3month waiting list just to see a consultant! If my wellbeing was priority would they leave a person with neuropathic symptoms for months with the risk of progression to permanent symptoms or deterioration? that’s what they’ve done to me and it’s because the nhs can’t cope with the huge numbers of patients.
Mri is not cheap to run. Especially multiple times. But mri is accurate and painless. It’s all you need in most cases.
Don’t let the scaremongers tell you that without a spinal tap you’ll get worse. Nobody knows how MS progresses. It’s a disease which is poorly controlled. The outcome is more to do with chance than what treatment you get.
Sorry, I think you may have drawn conclusions I didn’t intend Mssufferer. My LP was the last in a long line of tests, including numerous MRIs, nerve conduction, evoked potentials, bloods etc. It was certainly not the first port of call and my consultant was more than accomodating in my wish to avoid it if at all possible. Only when he felt it would enable him to give me a definite diagnosis after 3 years of progression did he urge me to go ahead with it.
I do not believe that they are requested because they are cheaper than an MRI. That was certainly not my experience. I truly hope you get some answers soon. It can be a long process, as I know.
I am shocked reading some of your posts at just how awful my LP seems to have been handled. I had read previously (on here mostly) about hospitals keeping you laying flat for a period of time afterwards and so that was what I was expecting.
My LP was unpleasant, and required quite a few attempts to ‘hit the spot’. It was done as an out patient and I was surprised and taken aback that I was led out by a nurse immediately after it was over and sent on my way. I was not even given the advice to lay flat, keep hydrated, take things easy. Thank goodness for this forum so I was aware of this. I guess some health authorities are better than others.
[/quote] you’re drawing wrong conclusions about the quality of treatment you received. If you read the Wikipedia article on lumbar puncture it says there’s no evidence that lying down after the test prevents headaches.
You know, you could get a private MRI. It’ll cost about £200. Then you’ll know . At this moment you come across as overly anxious and quite possibly mistakenly sure you have MS. You don’t. Trust me on this. Wriggle around and scream at the chemtrmtrails that I’ll bet you think are poisoning you. You don’t want MS.
There are excellent drugs to treat it now. They cost an enormous amount of money. One, if it works will stop any activity for 10 years. It has costs. The one I take, Tecfidera has risks. Big ones. I could die. But if it stops me from more attacks that have left me incontinent. I hate MS, with all my heart. I don’t want to live in pads, risking embarrassing leaks any more.
You know, you could get a private MRI. It’ll cost about £200. Then you’ll know . At this moment you come across as overly anxious and quite possibly mistakenly sure you have MS. You don’t. Trust me on this. Wriggle around and scream at the chemtrmtrails that I’ll bet you think are poisoning you. You don’t want MS.
There are excellent drugs to treat it now. They cost an enormous amount of money. One, if it works will stop any activity for 10 years. It has costs. The one I take, Tecfidera has risks. Big ones. I could die. But if it stops me from more attacks that have left me incontinent. I hate MS, with all my heart. I don’t want to live in pads, risking embarrassing leaks any more.
[/quote] whether it’s ms or not one thing I do know is something is wrong here. Symptoms like mine don’t just appear for no reason.
My evoked potentials were pretty conclusive. Later , thanks to bad nerve conduction, I’ve had both my knees replaced and I’m still recoverin. The coke was very nice after and so were the drugs. Then physio hit and I had to cut sessions down to 2 a week as I didn’t have the strength to pull myself up. I felt pretty pathetic, to be honest. No more as I passed the post op check. Back to work tomorrow. Ow.
hello supposed m s sufferer just what is it with you and the n h s .it would appear that you are the one that is speaking about costs.Not the radioghrapher,neurologists,g p,nurses .just who in particular has said "we can’t do your m r I so we will just do a l p as we feel that you are just an expensive patient.I don’t feel that you can speak for the people (us) who have this s&!#: disease.come back when you have had a definitive diagnosis.Yes we all have had to wait and see so just suit yourself what ever you decide.
What difference does it make if I’ve got MS or some other incurable condition? I’m dying and suffering. NHS don’t care about me. If they did, I’d be getting tests by now and I wouldn’t be on forums like this
MSsufferer. We are all dying. Everybody. From the moment that we draw our first breath we are one heartbeat nearer to the grave. What makes you so special?
This is a genuine question for everybody here that I am asking to disabuse a certain poster of their death-wish-conspiracy-theory mind set or at least make them think about what they were saying. DID ANYBODY HERE HAVE LP OR WERE ASKED TO HAVE ONE BEFORE MRI SCAN?