Cancelled my Lumber Puncture - am i mad???

New diagnosis and before diagnosis
1

Hi, i have lesions in spine and brain and have had one ‘episode’ were my legs went numb back in January. Neuro says I have 80-90% chance its MS and if it happens again I will be diagnosed. When I last saw the neuro a couple of weeks ago he said next step is a Lumber Puncture.

I have spent a week or two thinking and then the appointment came through, which I have now cancelled. Am I mad???

The way I see it is that I am so well now, my body feels great (apart from pain in left eye which I am seeing an opthamologist soon). I just dont want the worry of the Lumber puncture, from what I can tell it may give me an answer, but if I am well at moment they why go through it. If it ain’t broke don’t try to fix it!! attitude I suppose. I sometime think doctors are too keen

I feel I am lucky, I have been well looked after and throughly investigated (something I know a lot of people arn’t lucky enough to be able to say). I feel I have been given a heads up about me having MS and it will always be in the back of my mind, but I am well now and want to enjoy my life…

Head in the sand??? yeah definately!!!

2

I would have said: “Go for it”.

It’s and in and out procedure, I took less than 45 minutes - entering and exiting hospital - It’s not as bad as what you might expect.

hopefully your symptoms never return - but if they do - LP would be suggested and you would have already had the procedure behind you.

plus - if you had the LP: you feel good… the results are good - you no longer have to put MS to the back of your mind - you can forget it.

3

Hi ya Vicky,

An LP is considered an invasive procedure so it’s very much a personal decision and lots of people do decide against having one done.

You’re feeling well which is great news and if you’re happy to leave things as they are then in my eyes that can only be a good thing for you

Stay well

Debbie xx

4

This is entirely your decision but…

I would just like to say that if this is ms then the earlier you get a diagnosis - then the earlier you may be offered medication (dmd’s) - then the ms relapses can be hopefully reduced.

The more relapses we have - the more ‘damage’ the ms does.

Would you not want to slow this process as much as you can?

I know the lp sounds scary but my experience of it was a good one. No probs at all.

Head in the sand? Yes

in denial? yes

Are you mad? only you can decide!

Wishing you good luck and best wishes

Teresa. x

5

Hi Vicky,

I don’t think you’re mad. Although it’s not widely publicised - least of all by neuros - it is not (usually) essential to have a lumbar puncture in order to be diagnosed with MS. Clinical history and other evidence, like MRIs and VEPs, can be used with OR without LP evidence, to arrive at a diagnosis, although it may take longer to amass enough evidence.

I felt exactly the same as you. I’d had what by then were clearly spinal problems, but was recovering well. Absolutely the last thing I wanted was an invasive procedure that would involve messing about with my spine - where I’d already had problems. I didn’t want the stress and the risks (though small, any invasive procedure inevitably has some risks).

Another factor in my decision was that LP, just like all the others, isn’t a definite YES/NO test for MS. Results can be inconclusive, and there are a small number of false negatives AND false positives. So what I especially didn’t want, was to go through it only to be told the results were negative or inconclusive, and therefore did not help with diagnosis. If I’d been sure it would give a definite yes/no, I might have been persuaded.

Finally, another factor I took into account was that I was convinced that whatever “it” was, I’d already had it for years. So, in that respect, I couldn’t see any great urgency. Although early treatment is said to be important, what does that mean, in context, when you realise you’ve already been ill for five years, ten - maybe even twenty?

In the event, I only had to wait an extra six months anyway, because a second MRI after that interval showed new lesions, which were sufficient to diagnose regardless of the LP. So you aren’t just left undiagnosed forever, if you don’t have it - or at least, I wasn’t.

Tina

6

Hi, only you can decide to have the lp or to decline it. I was a bit surprised by TPATHs reply, where he/she said they were in and out of the hospital in 45 mins....??????? Surely everyone has to lie flat for at least a couple of hours afterwards. Perhaps TPATH didnt wish to follow the advice he/she was given. I do not mean to criticise that decision in any way…just remarking how surprised I am at reading it.

I had a second lp last month and im afraid it was almost as painful as my first one back in 1999. I wouldnt go through another one.

And as it doesnt give a definite dx of MS, whats the point?

luv Pollx

7

Just wanted to add my experience of an LP (July 2011). It was very positive. Just a sharp scratch for the local and then some pressure for the LP itself. I lay flat for an hour. Absolutely no side effects. The LP practitioner was undoubtedly a genius and an expert and did a marvellous job. Nothing to worry about (bar the result,lol) Teresa xx

8

Thanks for all your replies, it’s great to hear differences in opinion. I love this forum for that. X

9

Hi, I don’t think it was a big mistake to cancel the LP. Whatever the result of an LP there’s 5 to 20% chance that it is a conta-indication. (Ie MS is diagnosed despite a negative LP or there is a positive LP result and MS is not diagnosed). I think LP results were more important more than 10 years ago when MRI scans weren’t so high resolution.

I think getting your eye sorted out is the most important thing. Did your neurologist know about your eye problem when he ordered the LP?

10

Hi Teresa

I think I would have done the same as you and cancelled the LP. I am also of the opinion ‘if it ain’t broke don’t fix it’.

I have spent the past 3 months waiting to see if a LP appointment drops through my door and now I see the neuro on 25th Sept and I haven’t had one, so it obviously wasn’t necessary (which I really hope means I will be getting good news).

I had an epidural when I had my youngest child (17yrs ago) and I kept thinking that an LP must be similar but just taking stuff out instead of putting stuff in :smiley:

I really hope you continue to feel well Teresa :smiley:

Paula xx

11

18 years ago I had an MRI which showed lesions on my spine (I think) then had a LP, for me the procedure was no problem, the problem was the low pressure headache I had after it for 5 days, it was horrible. Then a year later I went back with new symptoms and was only offered a LP, doctors know best? so i had it, with the same resulting low pressure headache. Both LP’s came back “normal”, whatever normal is.

Like I said, that was eighteen years ago, but this year I noticed L’Hermittes sign, in fact I have had it for more than a year, when I looked into it guess what popped up, yep, MS. So two weeks ago I had anothe MRI and was diagnosed with MS, the Neurologist said he didn’t see the point in another LP, he said that before my MRI.

I was going to say I wish things like this web site were around 18 years ago, but you know what, I not so sure I do. OK, it has always been on my mind, I have had pins and needles in my left hand for the best part of 17 years.

So Vicky, I certainly don’t think you are mad, I have had two and they showed up nothing. Maybe you will end up like me, one of the lucky people who have got MS but the symptoms do not stop me living my life.

I do not know how my MS, first time I have ever written that, is going to progress, but I am not going to let it take over my life, I hope you don’t also.

Like evryone else has said above, the final decision is yours, but to reiterate, I have had two and was sent on my way.

Finally, I went back to my GP because of L’hermitte’s sign, Neurologist, MRI to diagnosis. The LeHermitte’s sign has almost gone now!?!?!?

Good luck with whatever you decide,

12

I think everyone on here knows that I had a horrendous LP but would I do it again knowing how bad it was so that I could get a more conclusive diagnosis - absolutely!

13

I think I’m with you on this one! I don’t think I’m up for an lp either.

14

Hi,

I’m new to this so please bear with me!

i have an appointment for a Lumber puncture next week and am really not sure whether to have it or not?

I have had a MRI which was abnormal and consultant said it was pointing towards MS?

I have read loads of good & bad reports about LP’s so really unsure?Do I really need this for diagnosis?

Any advice please?