Forum

Would you consider having a lumbar puncture as part of a progressive MS clinical trial?

Professor Gavin Giovannoni asks for our help in completing this short survey, which is explained in a 10 minute video. Apparently, RRMSers may benefit and can also participate.

http://multiple-sclerosis-research.blogspot.co.uk/2011/09/are-you-up-for-having-lumbar-puncture.html

Anybody living with significant pain would regard an LP as a pin prick,and for the 'needle phobic' you don't even see it.

 

Wb

I wish them well.  The thing that strikes me is that the population of MSers who would volunteer for a lumbar puncture is probably quite a small sub-group and, like any self-selecting sample, maybe has particular characteristics in common which are less well represented in the general MS population.  Not necessarily relevant characteristics, of course.  But still....  

How interesting.

Alison

x

ive already applied for this, if in any small way it helps speed things up then why not, plus lumbar puntures are the buisness, who doesnt like getin shanked in the back with a big pointy thing

And, besides, they’re going to be using atraumatic needles AND sonar guidance, which is how all lumbar punctures should be done imo to reduce discomfort to the patient.

Well done, you! Prof G is really trying to get things moving on progressive MS research - so hopefully plenty of progressive PwMS will volunteer to help.

Lolli xx

Well, I had to answer the survey honestly, and say that no, I wouldn't - let alone three of them.

Three cheers for those that are willing to go through this: I guess, if he only needs 60 people, there are probably 60 or more brave souls willing to go along with it.

But I won't be one of them, I'm afraid.  An invasive procedure is still an invasive procedure.  It doesn't really tip the balance for me that I'm in pain most of the time anyway, and could reason: "What's a little more?"

Anyway, I assume he wants genuine replies from all shades of the spectrum, and not just from people saying: "Yeah, yeah, sign me up!"

To know whether such trials are viable, he presumably needs to get an idea, not only of whether anyone would volunteer at all, but also in what kind of proportions.  If only 1 in 100 MSers would agree to it, he probably has quite a limited selection pool, but if it were 1 in 3, he's onto something.

I felt one thing the video didn't really address was that half the people who agreed to it would get no conceivable benefit (though they wouldn't know that), because they'd be on the placebo.

Although it's laudable to do something simply "for the good of mankind", I think undergoing THREE lumbar punctures, when there's a 50% chance you're on a sugar pill, is stretching goodwill a bit far.  I'm not suggesting monetary compensation should be on offer, but if people don't even have the "consolation" of early access to a promising new drug, but might be taking nothing at all, it's tougher to justify, isn't it?

Tina

i was thinking about the video...... can doctors tell how much "nuerological debris" is present from the samples that they took on the original lumbar punture? Do they keep these samples? or do they throw them away when they've seen what they're lookin for? I mean im interested cause this could potentially determine the timescale of decline

Never!! Sorry but the readmittance to hospital and 3 weeks of being unable to lift my head off the pillow after the last lumber puncture I had means that no one is ever going near my spine ever again with a needle no matter how much it might benefit me!
They can go wrong and I have had 2 dural taps one from epidural and one from lumber puncture, not everyone’s cells repair them selves as quick and they can cause more damage.
Hats off to more research but sorry not me x

Hiya

I am with Tina on this one-I didnt have one to get daignosis. I fully appreciate the need for research etc etc but sorry, this one isnt for me.

Good luck to the 60 that agree!

Ellie x

I read this one from the drug trails company and I immediately thought back about the effect my "diagnosis" lumbar puncture procedure had on me.

It was not a nice experience and my blood pressure dropped badly during the procedure.
I was also left with cerebella ataxia and have walked like a drunk ever since.  

The drug company conducting the trials claim they are using a new type of needle the dose not affect or damage spinal tissue but would I want to go through lumbar punctures whilst possibly being given a placebo drug.

Personally I would not subject myself to the torture.