denisa 17/11/14
Last reply 3 years ago
Lumbar puncture – did you have it done?

Hello all,

I’m becoming very anxious and annoyed by the fact that the neuro at the Teaching Hospital and MS Center scheduled me for a lumbar puncture this Thursday.

How many of you had anxiety? How many of you had a lumbar puncture as a measure for getting a certain diagnosis.

When I first had my optic neuritis and my first corticosteroid i.v., the neuro who treated me there gave me a MRI that found 12-13 lesions on the right side of my brain (parietal, frontal and infratentorial), which only 2 showed presence when injected with gadolinium. The second day I had my Visual Evoked Potentials, which showed a latency of about 33 miliseconds (an indicative of delayed nervous signals transmitted to the brain). I tested negative for other infections like Borrelia, Toxoplasmosis and others. My D3 levels were just above the minimum amount…. I feel fatigued, I had a mild paresthesia in late August..

I do not want to do a spinal tap. It scares me. The thing that scares me are the consequences like nerve brushing, malpraxis and such.

Thank you for your answers!
Hope everyone is feeling OK 🙂

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graham100
3 years ago

Yes. Iv had a few now, really not as bad these days as used to be. The needle now is the size of the hole in the needle I had age 16,, 40+yrs ago. Had to lay flat for 24hrs. only an hour now. Like lots of things it’s all in the head. (You will be ok) xx


miskovic75
3 years ago

I was scared myself too. But it was really nothing. Of course, I got some diazepam from my doctor before the procedure 🙂

In many countries, the lumbar puncture results are mandatory to get officially confirmed diagnosis – and then finally those expensive syringes, pills, etc.


stumbler
3 years ago

I agree with the guys above. I had a lumbar puncture in the late 90’s, having suffered a myleogram/graph procedure in the 80’s.

At first, I stubbornly refused the lumber puncture because of the problems with the Myleo? procedure, but I got persuaded, due to better technology and finer needles.

It went without a problem. But, it is normally suggested that you up your caffeine intake to assist your recovery, e.g. a standard (original) cola.

It will give the medical experts another bit of your jigsaw, so they can make a definitive diagnosis.


hannah015
3 years ago

I had a lumbar puncture with an MRI to confirm diagnosis in March this year. Didn’t feel a thing, I think the thought of it is scary but it’s not bad at all Hun x


xander
3 years ago

i had one 2 years ago and it was nothing the worse bit was the local anesthetic lol but lie still and drink coke and coffee after 🙂
i found the best thing is to try not to worry about things like this just except that you have to go through stuff like this from time to time
easier said than done i know
i was not a fan of mri’s but ive had so meny now im not bothered by them at all 🙂


nold
3 years ago

I had one in march. Lots of people told me how terrible a lumbar puncture is, so I was worried about it too. But it was over in a few minutes without a problem. Don’t worry, you’ll be fine.


jonesbear
3 years ago

I actually found the MRI worse than the lumbar puncture at least you get something to eat and drink after,although saying that my MRI last week wasn’t that bad,better than my appointment to see the urologist.

I had my first one just over 3 weeks ago …. Did not feel a thing, got to be honest didn’t even know what 1 was just lay on my side and was over and done with. You will be fine 🙂


graham100
3 years ago

I sat up on the bed and sort of lent forward, doc said that was the best way, for them, if you can do it. Not sure it’s true. Lol


denisa
3 years ago

Dear all,

I don’t even know who shall I thank and answer first! So, as I got my spirits up, I wish to thank you all for your encouragements. It’s reassuring to hear and know what others in a similar condition have gone through.

It may seem like a paradox, since I researched all that is to know about LP, that I was so afraid. I realise now that I was concentrating on the negative parts that might happen, I was reacting emotionally.

Through your encouragements, I realise how powerful a support group can be, especially when people who help you are confrunted with similar or maybe worse issues.

So… I will just go on with it. Recap: hydrate well, relax, stand still during the procedure and lie flat and still afterwards, continue to hydrate and drink caffeine, right? 😀

The appointment is this Thursday. Tomorrow I’m going to see my neuro about details for the puncture. Wish me luck!

Once more, thank you all, strong people!


vladimir29
3 years ago

To me it worked and I got an incredible pain. Even five days after the nausea and dizziness. CSF and MR has been confirmed to have MS.


barnabycrumble
3 years ago

Ive had one, didn’t feel any pain, local anaesthetic stings a bit and you feel a bit of pressure as they are doing it, but no pain, I sobbed before it was done, not through fear but just emotionally, because at last this might show what was wrong with me. Good luck love
xx


cameron
3 years ago

Hi @denisa. Problem shared = problem halved! Also, don’t forget that we’re all prone to over-reacting. It’s part of having any chronic condition (so my GP tells me), so we don’t need to beat ourselves up about it, just recognise that it’s going to happen from time to time. Big hugs, xx Kay


graham100
3 years ago

Don’t take any notice of Vladimir,, he’s just a woose,lol you will be fine. Don’t stress.


vladimir29
3 years ago

Graham we are not all the same !! Everyone differently submitted pain !!
And you got the MS 55, you had a healthy youth. I’m not the best days of youth.
Therefore, you do not have write stupid comments !!


graham100
3 years ago

Sorry vlad,, but when it’s obvious people are trying to make someone feel better about something I would think if you only have a bad experience to share,, DON’T. I was joking thought you may have got it?? Sort of thing I would expect Homer Simpson to say. Lol


denisa
3 years ago

Update: today I smokey with my doc about the puncture and she said that she will not use an anesthetic as it is of no use, given the small amount of time the procedure lasts. I will be sitting on my side and will receive a tranquillizer just to make sure I don’t panic! :))

So, Thursday morning, at 10 a.m., I am scheduled to get my lumbar done.

Guys, guuuuys! :)) After all, the truth is somewhere in between. Everyone has a different pain threshold, and it’s normal to feel differently.

@graham100, true, you were only kidding, because drama doesn’t solve a thing. But I really think that being dramatic after a recent Dx of MS is understandable. It happened to me too. At first, I was strong and remain so now… But… Yesterday I snapped. Turned to tears and saying that it is not fair, and how p…ed I am because of it. After I calmed down (that’s Why I LOVE my boyfriend, he puts the sense right back into me :)), I once again was the strong one I was three months ago, when I first received my Dx. Like @cameron said, we all snap from time to time, we need a vent, we need someone to reassure us and tell us it will all be alright.

@vladimir29, life is not fair, I know. I know also that a LP is not what we aside Santa this year, but try to make peace with your Dx. Graham100 was just kidding around. Since I signed up to this site, that was my first impression of him: a funny guy! And trust me, it takes a lot of guts to still have a sense of humour when you have MS. But you have to try to accept it gradually. Easier said than done, I know, but true. Try to know your enemy MS, so that you know how to best kick ITS ass! :))

By the way guys, for need of a small vent and just to make fun of my MS, I personified into a dragon. A dormant one. And named it Smaug! (Tolkien fan, guilty as charged! :)) ). I will soon share with all of you my Short story on how I tend to tame Smaug… Well, to keep it asleep and satisfied! :))

@sprinkletoes – thank you, dear! It sure helps being understood! 🙂

@edwardsummerhill – thank you! We all share a common denominator: we’re warriors in training! :))

@jonesbear – thank you! It means a lot!

@nold – thank you!

@xander – thank you! It will surely be easier done than thought. worries are the worst.

@hannah015 – thank you for the positive words!

@Mishkovic75 – true, the MS Cometei Chief may dens you the treatment. I will not think about the proceedure, and simply get in with it! 🙂

And… Last but not least, @stumbler: always a help, as usual! Thank you! 🙂

Will report back at you all after my proceedure. Untill then, I wish you all the best wishes and the best health possible!


denisa
3 years ago

Damon autocorrect! :)) I was meaning to say that I “spoke”to my doc, not “smokey”!! :)))


denisa
3 years ago

Damn! :))))))))


graham100
3 years ago

We knew what you meant.you had a pow,wow with the doc, sounds good to me. Lol


denisa
3 years ago

Graham100, I know that you guys do understand, I am the one with a slight OCD in this case :)) She said that anesthesia is not mandatory, but fi I could find the local one she recommended, we will use that. I thought it was hard to find, but I already ordered it. I will receive the package tomorrow. My mind can now rest! :))


stumbler
3 years ago

@denisa , the reason I was reticent about having a lumbar puncture was that my previous procedure, which caused a lot of problems, showed that I had a pronounced bone structure on my spine.

So, I was worried, but it went like a piece of cake.

As for predictive text, the following might make you smile:-

“The inventor of predictive text has died.
His funfair will be hello on Sundial.”

😉


thecuriosity
3 years ago

@denisa – I had my first one in March this year, and I swear, the only pain I had was no worse than a blood test and was for the local anaesthetic. you need to relax though, maybe take a friend/significant other for comfort. Mine sat there and made noises like ‘oh my gosh, look at that’ to try and wind me up really.

Thankfully everything was fine, and actually I was convinced they hadn’t done it when the doctor said ‘all finished!’

Definitely relax, and have something to watch/read while you lie down afterwards, it’ll make the time go faster.

Good Luck!


vladimir29
3 years ago

Hello everyone, I have not offended me, but I just wanted to say that I have regarding the LP had a bad experience. And I with MS fight of my life !! Well for 6 years so !!


graham100
3 years ago

Hey vlad. No bad feeling I was only joking, my normal life is over golf dance work non can I do any longer. But it hasn’t taken my life. My brother died of cancer age 35 so how can I moan? I will see the funny side of everything I can. It keeps me going. Good luck to you mate.


billpat1
3 years ago

Hi Denisa, like you I did not have a local, just straight in no problems. The only thing I would say is make sure you stay flat afterwards, for at least an hour. I wasn’t told this and just got up and started to walk around, got a massive headache, so just relax!!!


aussiekylie
3 years ago

I had one a few months ago. I was very worried about the headaches. Mine was done under radiological guidance and honestly I didn’t feel anything except the local anaesthetic. I was surprised when they were putting the dressing on and said “have you done it already?”
I layer flat for 4 hours after.


webbexpress
3 years ago

I found it a little uncomfortable but I think that was mostly in my head being nervous.

Physically you barely notice, just relax enjoy! 🙂


denisa
3 years ago

And it’s done! :))

I’m still in the hospital, as my doc wants to be sure it’s everyting ok. I just finished my 4 hours laying flat and I’m doing juuuust fiiine!

The stuff I was imagining were bigger and more awful than the puncture itself. I just felt a pinch and after just a bit of pressure it was all over. I am such a woos! ;))

Thank you once again for your encouragements guys! You’ve been very helpful and kind.

One week from now, my results will hopefully be ready and my doc will be able to put a clear diagnosis.

More info tomorrow! Have a nice day, everyone!


stumbler
3 years ago

Well done, @denisa . 🙂


daisy
3 years ago

Nice one @denisa – don’t forget how awesome and brave you are 🙂


tabbycat
3 years ago

Glad it has all gone well. Do not over do it! Like Vladimir, I had a pretty rough time too, but it seems we were unlucky. Stay lying down as much as you can and follow your doctors advise strictly .


graham100
3 years ago

@denisa, well done you. Now it’s over I can tell you the truth I was horrible I thought I was going to pass out, especially when I trainee had a go at me, 3times then someone else had to take over I had 4 big holes in my back. And had the worse headache ever. Lol. (Good job I’m tough). Haha


rose54
3 years ago

Hi, I had a terrible experience, and I had a feeling that I should not have it done, looking back I should have not had it. So, my thing is, I should have listened to my my inner voice instead of everyone telling me that it was the right thing to do. I won’t go into my horrible experience, but I definitely wont do it again! For some it is not a big deal, but I guess it is for some others. The doctor who performed mine, ran into a problem, could not get the spinal fluid to flow so he started fishing around to try and reposition the needle, the result was a bad leak which took 4 weeks to resolve. Like I said I won’t go into the rest, too much. And the test was negative because I was on prednisone for lupus, so a waste of time. Never, never, again.


kimcarlson
3 years ago

Good luck.
I ahve had two.
Make sure you do not move around after it.
You should stay still/lay down for as long as possible.

🙂


sunnydaylover
3 years ago

Hi,they confirmed diagnosis from my MRI but still wanted to do an LP, I asked was it definitely MS, they said yes, so I said I wasn’t having an LP done if it wasn’t necessary. Had the needle to go in the top of my back, no problem, but no way was I letting them at the bottom of my back.Too tender, and I never really speak up for myself, but had to then.


gwenny
3 years ago

Hi Denisa, I had one done 15mths ago, where I sat on the side of the bed, and had to bend over as much as I could. I didn’t feel a thing, but having said that most of my body was numb at the time, so maybe I was very lucky. Sometimes we work ourselves up before having certain procedures, and I find it’s not always a good idea to read about things, or get other opinions before procedures.
Hope your report gives you the answer or answers you’re looking for.
This site is wonderful for getting much needed support, I’m so glad I found it 🙂

Hi Denisa,

I had it done 5 years ago…….bad experience for me, touched a nerve and my leg nearly and my leg nearly shot into the roof!!! Headache from hell too!!

There was about 6 of use in the ward having it done that day and nobody else felt a thing. Guess we’re all different, plus old footballing days means my back is a bit dodge anyway……discs a bit close together!!

Glad yours went well with no problems!


jman
3 years ago

Had one a long time ago.. The doc had me sat up, hugging a pillow.

It was, unpleasant, but not as painful as I thought and it helped she had a decent bedside manor.. Ached after like someone had kicked me in the back, but I can think of worse things..


denisa
3 years ago

Hello guys!

I’m now comfortably lying in my bed at home, and reading all of your messages. Wow! So many in such short time! Thank you for all your encouragements and congrats. It helps a lot discussing issues like these with people who have been through the same MS saga, so to speak :))

I guess this lumbar puncture is a dressed thing for most of us. But, given the fact that I got through it, all that I can say is that you must think that whatever happens, happens. I was extra worried and it made my anxiety jump through the roof. It’s very important that you lay flat for more than 2 hours. I know it is unconfortable, but it sure is worth it, as I had no headache afterwards. I also drank almost 2 liters of water during the four hours I laid flat, and lots more afterwards. Going to the loo was solved quickly, as after the first two hours I was told I could get up only to gomto the bathroom and back :))

As for the procedure itself, I layed on my side, felt the needle coming in, and a sort of depressurisation when it entered the dura and collected the spinal fluid. It was over in less than 5 minutes or so. I could not believe that that was all.

Now my back is a bit sore, but it is normal, as my body needs to heal the needle hole. Lots of rest, no extreme temperatures and heavy lifting, and of course, tons of water!

I’m sorry to hear that some of you have had bad experiences with this procedure. I think it all depends on the doc and how your body handles it. My Lp was done by a MS specialist, search for one if you must have the Lp. I think it helps.

@graham100, I knew it! :)) So kind of you that you kept the nasty detalils for after I had it done. I’m sorry to hear that you were that unconfortable during yours.

Well, guys, sorry for writing such loooong posts :)), but I had a lot to say and a lot to thank you, as your support means a whole lot to me.
A week from now I will get my LCR analysis results, and find out if I have a high IgG index and a high oligoclonal band count.

Will keep you posted with news and INFO, as they come up. Untill then, we can chat on this thread some more. Hope everybody is feeling well!

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