Saw consultant on 19/7/12 when he told me the MRI of my neck showed lesions which he said was MS
Had MRI on brain and blood tests, heard nothing so rang up and asked when am i going to get a definate answer, was told i now have to go for a lumbar puncture.
Just need advice on the routine and what to expect for this procedure
Also has anybody else had the experience where they get told its MS but then have to wait ages to get confirmation or am i been unreasonable ??
Hi Cardo, I have had a couple of LPs. It’s not the most pleasant procedure but it doesn’t take too long. The doctor will explain everything but in essence they give you an anaesthetic and insert a needle into your lower spine and extract a small amount of your cerebral spinal fluid. You may experience a little pain in your leg as they get the needle in the right place. I really recommend drinking lots of water ahead of the LP as I was a bit dehydrated which made it harder to get the fluid. I had a banging head for a few days after so give yourself some time to recover just in case. However lying down does get rid of the headache. It is sometimes difficult for the doctor to get into your spine- if this is the case (like mine) then you may have to go back for an x ray guided one. With regards to the results, I understand they can take up to 6wks as they’re sent to a central place. I had mine back within 10 days as I chased. I had a negative LP result which was unexpected- I therefore was referred to a ms specialist who diagnosed MS (based on lesions from my MRI and various other things). It took about 2months from my first MRI to getting my diagnosis. I’d be prepared for it to take a little time to get your diagnosis. They’re being thorough with you by doing the MRI & LP which is ideal. However, I appreciate limbo isn’t nice so take care. Stardust x
Hi car do You will have to have a blood test as well as they need to test the serum and compare it to the CSF. You will have the area on your spine numbed bt a local. Then, you will feel pressure on your spine for the LP itself. It should not hurt if the guy doing it is any good! You may have to lay flat for a couple of hours afterwards. Lots of fluids after will help too - especially caffeine- based drinks! Unfortunately, a dx of MS is not a simple process and many tests are often needed to make the dx complete. An LP is not essential to complete the MS jigsaw but neuros often want them done to dot all the i’s and cross all the t’s. Waiting for results is what everyone on here has in common, I’m afraid. hth Teresa xx
Don’t know why went anon, must have pressed the button accidentally. Teresa xx
Thanks for that
To be fair i was a bit miffed when i posted this, as i’d had to chase up the Consultant to find out what was happening, to be told haven’t you had a letter re the LP.
Nothing had come through the post and arranged the LP myself over the phone, i understand that they need to be thorough it was just the fact nobody seems to keep in touch or explain whats going on
Rant over.
Can i ask are you up and about the next day, only asking as 5 days later i’m due to go on holiday ?
I was absolutely fine Cardo. So you should be fine if you have agood LP practitioner and stick to the advice they give you. Teresa xx
Mmm it did take me 5 days to recover. You may well be fine, but perhaps just back before your LP!
I didn’t have a problem with my LP it went very smoothly. The doctor asked me to lie on the bed on my left side so my back was facing her I then pulled up my shirt and she showed me the needle she was going to use to extract the fluid.
She then numbed the area with anasthetic (the most painful bit) she then entered the needel to extract the fluid she wanted it did take about 30-40 minuets before she had all she needed but was very calm and spoke to me throughout.
She even showed me the fluid she had extracted and told me that I was a very ‘paitent’ paitent
My aunt then helped me to the waiting area where I had to lie flat for about an hour and had a cup of coffee but some people on here have said they had coke.
Try not to worry it is a very simple procedure
Had LP on Wednesday, to be honest it took them longer to find my notes than to do the procedure 
Soon as it was finished i was allowed to go home, no waiting time
Followed the advice re cans of coke,had a dull headache afterwards nothing to drastic,would say to anybody waiting to have one the thought of it is worse than the actual thing
Had LP on Wednesday, to be honest it took them longer to find my notes than to do the procedure
Soon as it was finished i was allowed to go home, no waiting time
Followed the advice re cans of coke,had a dull headache afterwards nothing to drastic,would say to anybody waiting to have one the thought of it is worse than the actual thing
Glad it all went smoothly so hopefully you can concentrate on your holiday.
I am afraid the frustration of waiting will be with you for a while yet…this is purely my experience but I dont think its unusual.
ON led to neuro appt,then mri,neuro follow up.With all the waiting for appts took 7 mnths. Told it was CIS and to go back if anything happened in the future.
ON again plus other stuff 4mnths for neuro appt and mri. At that appt he murmered vaguely about ms and had I seen the ms nurse…I said no one has said ive got ms. He said go and talk to your gp in two weeks time and ask to be referred to the QE and I will refer you aswell.
Asked the gp who said well the neuro has put on your notes its ms!!!
Went to the QE 2 mnths later and given green light for DMD and a futher 3 mnths later I started copaxone.
All I am waiting on now 12mnths later is my pension as work said they could no longer make adaptaions…so in effect I’m still in general life limbo.
So enjoy your holiday and forget about it all.
Pip
As most people on here know I had an absolutely horrendous experience when I had my LP due to the fact that I’ve got scoliosis- and unfortunately still having really bad back pain a month on! What I would say is to make sure that you have someone experienced a d make sure that of they don’t get it within the first couple of times ask for someone else to do it. Definitely have a big bottle of coke and a straw and drink the whole lot while your lying down after the procedure as it seems to prevent the LP headache