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Discussion Starter #1
ok, i confess, I was one of the 9 NPSLE patients in this study.

Here's the link:

http://www.ncbi.nlm.nih.gov/pubmed/...ez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Basically the study shows that those of us with NPSLE have to use additional areas of our brain to do various tasks to make up for the damaged areas of our brain.

This test involved doing a variety of cognitive tests while having a functional mri. The functional mri (fmri) lights up the particular area of the brain that is being used during the task. It feels just the same as having a regular mri, except that you don't get to have a snooze while you are having it as you have to keep doing various tests.

I have been sent the full article, which was really interesting. They are also comparing people with sle who don't have npsle to see if they show the same pattern or if this is just a npsle thing, and this will be published later. They will send out the results of this to all people involved in the study, so I should get to hear about it.

It is very strange to read up all my symptoms and treatments in a study !(the full version)

cheers

raglet
 

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Good for you Raglet! It's great that you took part to help other lupies but it's also good to find out more about your own condition.

I'd be really interested in reading the results. Keep us posted.

Hugz,

Pam xxx
 

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that's really interesting the linking of cognitive tests to mri piccies of what the brain is doing, and its a great thing I think to take part in research, I look forwadr to hearing more on this! My consultant last time I saw him was talking about some sort of new direction with np and testing, interesting!
 

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Hi Raglet,

Thank you for passing the information on. Since we are having to outsource to other parts of the brain that could explain many things such as signal delays for movement. Maybe with your help and the help of the others it will be easier to diagnose npsle.

Take care,
Lazylegs
 

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I think there has been a study done using fmri and motor function - no idea what it showed though.

I will look for it on pubmed - here it is


http://www.ncbi.nlm.nih.gov/sites/entrez

it's more about using additional area of the brain to maintain normal function though, which doesn't explain those of us with abnormal motor function. only had a very quick glance at it (rushing out the door to the doctor - stupid asthma)

raglet
 
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