Tricia, I totally agree with you. It's a crapshoot. And lesion load surely does not equate to disability.

I'm sure any imaging center will be happy to let patients have as many MRI's as they are willing to pay for. Unfortunately, MRI's simply cannot tell you how disabled you will become based on lesion load.

LillyMS, I'm sorry you feel that I'm irresponsible and foolish not to put more weight in my MRIs but I've had MS for years and so far the MRI has not matched the level of disability I have (or had).

Ya, I'm fully aware of how some pople can have only one or two lesions but are in a wheelchair. Whereas on the other hand, people like me who have horrible volume lesions are fine.. for now at least. It really is crazy when you think about it.

I know the analogy you could use is: Someone shooting a gun in a dark room and if the bullet hits the light switch that controls the light in the room... then that room is screwed!

Still, I feel like a ticking time bomb with so many lesions. One neuro said I'm on the verge of serious problems if I don't get on MS drug and that "the only reason I'm doing so well is because I'm young". I don't believe that for one second. I'm not even that young anymore.

The radiologist wrote the following my my MRI report:

“extensive white matter disease suprantentorially as well as along the brain stem and cerebellar peduncles."

All I have to say is I don't like the word EXTENSIVE or any of the other words in that sentence! I'm a bit freaked out to say the least. That is saying I've got disease several places in the brain, not good.

Take a look at my attached MRI report. As you can see my MS progressed SEVERELY. I have a TON of lesions. This MRI was done couple years ago, since then it's been stable... but look at how AWFUL my MRI is. The radiologist forced me to see the neuro right away immediately after he removed me from the MRI machine. He wouldn't allow me to go home. I didn't even have appointment with neuro that day! Luckily, neuro was in same building.

I really feel like I'm screwed. I feel like a ticking time bomb. Don't know what else to say. Anyone else here have scans this bad? I was symptomatic, yet look how bad my MRI scan results were. Yet as you know, some people with only one lesion can be in wheel chair. This is crazy stuff!

Attached Images

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My research indicates that a high lesion load is a strong indicator of future long term disability. There may be other factors such as DMD drugs that could alter this outcome.

jackD

I am totally screwed. I am only 34 yrs old (very athletic female... run 3 miles every day on my thread mill etc) and should enjoy the days I have left. I got MS in 2002... it is now 2014... even though my MRIs look TERRIBLE I am still doing way better than 99% of others with MS because I feel completely normal as if I didn't even have MS. Unfortunately, I doubt this will last!

I will not be taking any MS drugs. Just giving LDN a try and getting MRIs every 6 months. If new lesions start to form I will then get back tecfidera as my last resort. Have to give LDN a shot first.

EDIT: For those participating in this thread... do you have anywhere near the volume of lesions I have? I am seriously freaking out here. This is not good

This is really confusing. I think I just found a contradictive article here:

https://www.facebook.com/notes/ccsvi...51429538792211

Note: I merely glanced at this article (don't have time to read it now), so hope I'm not wrong.