MS discussion night before last

[anon07072023]

Hi Everyone,

I went to an MS discussion the other night conducted by the head neuro from the MS Center that I go to.

Overall, it was a very good discussion and his answers to questions seemed intact with the research that I have read - and also with what I've read on this forum.

A girl sitting nearby asked him about the validity of Benign MS. He said, that, yes, it does exist in about 10% of patients. However, he noted that no one knows for sure that they truely do have benign MS until about 15 yrs down the road. And by then, he said maybe about 50% of those who had originally been labeled as benign, actually have disability.  So, his suggestion and emphasis is to ALWAYS treat with DMDs.

Another item that came to my attention was another person's question regarding having MS but having a clear brain MRI.  The neuro said that people COULD have MS with a clear brain MRI.  If the symptoms match and they have ruled out everything else. In particular, he said that someone could have lesions in their spine and they may not be able to see them, because they're very difficult to see.  

OK, I thought that I would just share that.....

Thanks,
Kelly

[anon07072023]

Thanks Lu,

This was our first talk.  We actually opted to go to the one that was at the library, instead of the restaurant that was the next day.  We weren't for sure what they were serving, and I try to stick to a semi-strick diet.
And it was still enjoyable and informative.

-Kelly  

[Lulu54]

thanks for sharing this - I am a big fan of attending these talks ,and it's not because of the free dinners.

I always either learn something new or my basic knowledge of this MySterious disease is reaffirmed.

thanks again, Lu

[COBOB]

Doc Q told me that some of her stuff on CIS came from a presentation that Dr. Timothy Vollmer did.  He has a good reputation the the MS community.

[sllowe]

Popping in to thank you for re-capping your meeting!

The info you relay validates what Doc Q has taught us here.

So grateful you shared this.
-Shell

[COBOB]

I have my 3T MRI in Aurora at CU Monday evening,  Have to go pick up my Valium today.
I'm being seen by Dr. West in the Neurology Dept at CU at this point.

Bob

[anon07072023]

Hi Bob,

It was Vollmer - at the discussion they had in Colo Sprgs.  I really liked him, but I'm not one of his patients. I go to one of the other MS neuros there.  Corboy is one of my friend's neuro.
He was also saying it's a good idea to have your spinal MRI done on the more detailed MRI - the 3T. Next time I go, I wonder if my neuro there will let me try it. He had said last time I spoke with him that he likes apples to apples, so didn't want to try the 3T. But, he seems to flip flop a little, so mayhe he'll change his mind.

Julie, that's great that they were able to see your lesions in your spine.  I have at least 2 lesions in mine.

Kelly

[jujuminx]

I am one of those people with no apparent brain lesions on an MRI and I have had more than a few over the last 18+ yrs.  Only lesions found in spine but both new (from recent relapse) and old.  Got my dx as soon as spinal confirmed lesions.

So far no lasting sx and am on copaxone.

Julie

[essdipity]

People have posted here that their MS was quiet and symptomless for even more than 20 years, and then whammo. So you never know. Harm can be occuring in the CNS and we have no clue. So yes, DMDs are always a good idea.n

Regarding brain MRIs, Quix has told us that about 5% of MSers have no lesions (see Health Pages). However, it's the rare neuro who will give a diagnosis under those circumstances. Back before the invention of MRIs, doctors were forced to rely on clinical symptoms and signs, which no doubt made them better at their jobs.

ess

[COBOB]

Was this Dr. Timothy Vollmer or Dr. John Corboy at University of Colorado?

Bob