T 26/09/11
Last reply 6 years ago
Are MS’ers willing to have LPs for clinical trials?

Please help out with Prof/Team G’s survey to find out how willing MS’ers are to have LPs as a way of assessing effectiveness of potential neuroprotective drugs. All MS’ers can participate, not just PPMS’ers (as denoted in the blog post). Link below!

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T
6 years ago

smallbrowngirl
6 years ago

Hello there, I am always one to help out. But I’ve had 4 LP’s, my forth being the most painful experience. I suffered a leak, and was vomiting and suffered headaches that hurt so much I screamed. So sorry I’m totally declining the offer. Adaresh


T
6 years ago

Hi Adaresh,

The survey is to gauge whether people are willing or not – so even if you wouldn’t be willing to have more LPs, your opinion would still count! So please do fill out the survey if you have a bit of time :o)

T


ghada
6 years ago

Had just skimmed this very quickly.
I assume, this didn’t get funded due to ethical concerns/ethical perspective? the survey is i suppose to test the feasibility of running this trial by getting an idea of how many would be willing to participate or not. Personally, with the risks associated with the actual LP procedure would not participate unless there is evidence that the new needles are safer and cause less pain/migraines etc i woudl have to look into it closely.x
gxx


T
6 years ago

Hi Ghada,
Yeah, you seem to have got the gist of it! The main idea seems to be to gauge how willing MS’ers are to have LPs. I personally had a pretty good experience – bad backache which was manageable with painkillers but no headache. Mine was done with the new-style needle though, which probably made a difference! I know other people who have had absolutely awful LP experiences and just the thought of them going through it again makes them feel ill! x


IANG
6 years ago

HI T SORRY I DONT KNOW WHAT TO CALL YOU . I WILL HAVE A LOOK AT THIS FORM . I WOULD NOT GO FOR IT UNLESS IT WAS ABSOLUTLEY NECESSARY . I DONT LIKE NEEDLES FULL STOP BUT I WILL HAVE A LOOK . TAKE CARE AND I WISH YOU WELL ….IAN G X.


T
6 years ago

Thanks Ian (“T” is fine with me by the way ! Lol).
The response rate to the survey is slowly going up, which is good. The more opinions that Prof G gets, the better! There’s also some interesting posts about LPs on the blog too, if you’re interested! I never really liked needles either until I started having goodness knows however many blood tests etc. and had to start self-injecting! Now, I’m absolutely fine with them so I guess something good has come out of my thrice-weekly meeting with my syringes!

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