I have my LP on Friday and am utterly crapping it. I am prone to panic attacks which make me shake violently so a bit worried that if I have one they wont be able to accurately stick the needle in. I mentioned this to the neuro when she said I would need one and she did say I could have a mild dose of Diazepam to calm my nerves, so this is something to consider if you are particularly nervous. I think they are fairly happy to give it to anyone who asks, and routinely give it to children to keep them calm so it must be a fairly low dose.
Personally, the idea of being drugged and having strangers doing unwanted things to my body is an equally traumatic thought so ho hum, think I will skip it and try powering though under my own steam. I plan to drink a ton of water and zone it all out as best as possible.
Out of interest, does anyone know if a small amount of caffeine does actually help deter the headaches? It recommends it on the NHS website, but a friend of mine who had one prior to her MS diagnosis said she had a few coffees when she got home and developed a cracker of a headache for a few days. I was thinking it might be worth drinking a can of full fat coke after for the caffeine/sugar.
I was told I could take 5 mg or so of diazepam, pretty much the same as I do for for an MRI. You really canāt feel that youāve taken it, you donāt feel drugged at all, you just donāt get as nervous. But you should take it an hour or so before and so anyone who wants it really needs to talk to their GP.
I was told a caffeinated drink would help, but as I havenāt had caffeine for decades, I passed on that one. I didnāt get a headache anyway, but I did drink a lot of water both before and after and I did take it very easy for a few days.
The SHO who did mine used a tiny needle, it took a lot longer than most people say because of that, but she said it reduces the chances of headache. I jumped massively when it hit my nerve, but it didnāt matter. I was really worried about the possibility of that happening, but it doesnāt hurt, you do just jump, so Iām sure youāll be OK.
Good luck!
Hi after phoning saying to neuro secretary I didnāt want to go through with it, I received letter today for appt. on Friday too how strange lol Iām thinking of just going for it now get this whole thing over with but thinking of taking some sort of relaxant too. If it comes back inconclusive I will be very angry as I really do believe I fit McDonald criteria already but sick of arguing with NHS itās been a hobby of mine for years now haha xx
Well, because mine came back positive I now have a probable ms diagnosis and a few more services etc have opened up to me as a result, although it hasnāt got me a DMT yet. But I see it as a step on the way.
Also, they told me they store the fluid so if some new diagnostic tool becomes available you donāt have to go in and have it done again.
And nothing wrong with a bit of diazepam to get you through a difficult period. You might get the benefit from just knowing youāve got it and can take it if you want.
Thanks! Thatās great to know about not feeling drugged. Itās not something Iāve had before so wasnāt too sure how strong it would beā¦ Iām there all day, got the MRI in the morning and LP when they can fit it in after so I think I will see how I feel on the day and if itās looking like a panic attack might be likely I might ask for some when I get there (the neuro said I wouldnāt have to pre-arrange it or anything)
Logically, I know that the build up and worrying about it is far worse than the actual procedure will be, but sometimes itās hard to not be a massive ninny about these things! Also, I bet the nurses are used to everyone being nervous about it so will know how to calm people down. I was bad enough for the blood tests and the nurse who took them was fab, very reassuring and efficent.
Ey dear, what a day. On the plus side, my boyfriend has got a copy of Spinal Tap to watch after with a symphathy curry so thatās something to look forward to!
I would go for it coco, if you are less concerned about it now. Yes, there can be uncomfortable side effects but surely having as much information as possible can only be a good thing. (But ring and check that the appointment hasnāt been cancelled and the letter was sent by mistake)
I think I saw elsewhere that you are in Scotland? If you happen to be going to Glasgow Hospital I will be there too. We can have a LP party.
Omg thatās really weird eh? yes new one in Glasgow. I phoned she said yes defo still on here I think the neuro used a bit of psychology here haha he probs knew I would go if I got letter quick enough! My appt. 8.30 but donāt know if thatās time Iāll get it so Iāll no doubt see you in there Iāll be the one greetin haha x
Thanks for all your kind advice Teal. Really do appreciate it x
Cool! Well, I have to report to the day ward at 9.30 for a full day of being poked and prodded. If you see someone knitting furiously that will be me. Good luck! donāt forget to drink loads of water before and after, I gather that is the key to not feeling so rough after.
I had my LP at the QE in Glasgow back in January, i used a hot water bottle for the week after and was all fineā¦back in a couple of weeks for Lemtrada round 1 
A week! Blimey. Suddenly thinking that the camping and wedding down south thatās planned for next week might be a bit optimistic. Hey ho will see how it goes!
Hi sunshine days thanks for advice, good luck with your treatment Iām hoping to go for Lemtrada too if available to me looks promising 
Id that your first DMD? Itās just Iāve read that much that you have to try others first x
Yeh itās my first DMT, I did loads of reading before my first appointment and basicly said that was the DMT I wanted and listed the reasons why, is your neuro based at QE?
I was DX without an LP but the Barts blog write the results are useful re. prognosis, eg Multiple Sclerosis Research: ResearchSpeak: Neurofilaments as a predictor of conversion to MS. Have a search on their site. They also have produced, Your Lumbar Puncture at The Royal London Hospital.
Re. Lemtrada, its licenced for first line use. As an induction therapy (or PIRT) rather than maintenance therapy (also less effective except 2nd line Tysabri) I would have been very interested if available when I was DXed.
Hi everyone,
Just thought Iād let everyone know LP went ok (he hit a nerve right enough :/) and thankfully Iām fine and I did not get terrible headache! After all my moaning about lying flat I never even lay flat in hospital haha just a recliner chair.
Thanks to everyone for support xx