Other thoughts to share - from today's luncheon

[Lulu54]

Today I heard a neuro talk about  a number of things at a luncheon --- I already posted his most profound comment about how much more MS patients know as a general rule than neurologists.  :-)

He also talked about the problems with spinal mri's.  He said almost all imaging centers do spinal mri's  using degenerative  disease protocol on MS patients.  He said when we get spinal mri's done, it needs to be specified that they be done to spinal cord imaging criteria which is much different.  Just like our brain mri's ........

He also believes that more important to following the progression of our disease than watching lesions (and their changes) is to measure our brain atrophy.  There is a FREE software program, I believe it is called Siena, that is made by Oxford University.  He said the reason why more imaging centers don't use this software is they lack people trained in its use.  

He gave an interesting number that I had not heard before - for every clinical spell we experience (visible symptoms) they believe there are 9 behind the scenes episodes in our brain that we don't see.  In other words, we only see on the surface10% of the damage being done and is not a true picture of what is happening.

that my friends concludes my notes from today,
Lulu

[Lulu54]

Pat,
If you don't want to speak up, then you might as well have flushed that money down the loo.  You paid for a good MRI and should have received one.

Let us know what the consultant says should be done next.
Lu

[Eyesnlegs]

Thanks so much for this, I needed some 'ammunition' for my next neuro appointment. His secretary told me on the phone the other day that my spinal MRI was normal - which does not surprise me.

It cost me a fortune but was done in a mobile unit at the side of the swish new clinic, it looked as though it had seen better days, even the headphones did not work. It was 1.5 tesla, and I am overweight, which Quix confirms makes things more difficult with spinal mri's. When I asked if they were using MS protocol she just looked at me blank.

It is unusual in the UK to get a copy o fthe pictures, but because it was a private appointmnet they gave me a copy on CD and we have studied them closely and there seems to be quite a lot of issues that need a clearer picture but the images are very poor.

So, thanks again I am still nervous about telling a consultant that the diagnostic technique they used was rubbish!!

Pat
x

[Nancy T]

Thanks Lulu. It is always interesting to hear comments from the neurologists and the latest thinking. Thanks for taking time to post this.