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Has anyone else had an LP post diagnosis?

Hello, I was diagnosed with MS this February after MRI of brain and spine showed multiple lesions and an abnormal clinical exam. My Neuro has been very thorough with all sorts of blood tests post diagnosis and wants an LP which I have been waiting for since February. At the time I asked him if it was clear, would it change the diagnosis (clutching at hope) and he said no. Can anyone shed any light on why I still need to have the LP? Is he looking for specific information that may alter treatment or the type I have (RR). Thank you in advance for any help. Sam xx

Hi Sam I was diagnosed with ms at the end of 1995, with no tests at all. Betaferon was new then and I wanted to go on it. The health board were not funding it but he got them to agree to put me on it. After I had started betaferon he said I should still have a MRI scan, just so there was something in my records. He did back down on an lp though and I was not keen. Perhaps your neuro just wants a complete set of tests to show in your records. Cheryl:-)

Hi Sam,

I’m another one diagnosed without LP, so I can’t see why on earth you should need one if you’re already diagnosed, and he has said it wouldn’t change things.

Perhaps the simplest thing would be just to ask him? Nobody should be expected to submit to an invasive procedure, in my opinion, without understanding what it’s supposed to achieve.

If it was: “Just to ensure we have a complete set of records”, my answer would be: “No”.

Tina

x

I’m the same as Tina - dx’d without LP. My neuro also wanted to do one for completeness, but as everything else clearly pointed to MS, and he said it wouldn’t change his dx anyway, I politely declined!! X

I was diagonoised 5 weeks ago after a brain scan and my Nero said i need a lumber puncture has they are only 99.9 percent sure and the lumber will confirm it that I have ms lol, I am waiting for an appt but don’t fancy having one but it never occurred to me I could say no I don’t want onex

Please what is LP ? Ta x

K think is lumper puncture Sorry Ta xx

I didn’y have one but have strong evidence with my symptoms (I’m most likely to have PPMS), I had the spinal MRI first after a fall and that had little white dashes all over it, so the head MRI was a formality and confirmed the diagnosis. I asked if it could be something else and was told “undoubtably MS”.

If the MRI’s match up with your symptoms then the MRI seems pointless unless there’s a little bit of doubt.

Good luck whatever

Sonia x

Hi Sonia It Rahma here, can 't sleep yet

Hi I read on the Barts MS blog that the Prof G reckons that people with MS and a clear LP will follow a less active MS. He also says that he thinks people with negative LPs do not have “true MS” and reckons everyone should have one. Maybe your doctor wants to check this theory out which is why he is asking his patients to have one.

If you google Barts MS Blog and then type in “negative Olicogonical Bands” or “negative LP” you can read for yourself.

Moyna x

Thank you for all your help, much appreciated. I’m quite nervous about it and didn’t get much notice, received letter on Saturday and the appointment is for this Thursday. I will look at that website Moyna, thanks. Sam x

I had to have a LP 10 years after my diagnosis to be allowed to move from Rebif to Tysabri - is there any chance your neuro is going to be suggesting Tysabri for you?

Hi I’m awaiting DX , have had brain MRI & spinal MRI found lesions on both, Then evoke test . 2 previous neuros said suspect ms , then referred to ms neuro who made me do all kinds of movements,balance etc . Said suspect RRMS but won’t confirm or offer me treatment until after LP. So bit the bullet and had it done this week now awaiting to see him again, I’ve had this flare for 16 wks now and still off work, admittatly I’m better than I was but its still with me