I don't focus on the MRI results too much.

My Neuro likes to tell me that it's like real estate.......location, location, location.

You can have an MRI that lights up with hundreds of lesions but still be asymptomatic. Or......you could have an MRI with just one lesion but that lesion could be in a location that causes all kinds of symptoms.

So, I don't put too much confidence in my MRI. I go by how I feel.

I was diagnosed in 2005 but I believe I've had MS for many years before that. Just never knew what it was and never had symptoms severe enough to check them out.

My vision went haywire in 2005 and that is what sent me to the doctor and eventually got me the MS diagnosis.

Since then I have gotten many more symptoms and I know my MS is progressing. My balance is shot and my left leg is pretty useless. I use a rolling walker to help me walk.

I'm trying Tecfidera right now but my insurance is throwing a fit because of the cost so I'm not sure I'll be able to continue it. Wish they had just denied it the first time. Now I have to potentially stop a medication that I was tolerating very well.

[/URL]LDN is very effective in reducing the damage from excess glutamate which causes BIG nerve damage in 2nd stage of MS.

1st you lose the myelin - 2nd the nerves get cut- neurons get assassinated(BIG loss in function here)

I have lost my links to these articles because the links are just gone to the internet cloud graveyard.

If you get some of my BRAIN TONICS you can reduce this type of brain damage.

http://neurotalk.psychcentral.com/thread199567.html

jackD

p.s. Will post more later. I took a Zanaflex about 10 min ago and must rest or I will fall off my chair ..again!

I tend to think its all a crapshoot whether or not one will progress and if the DMDs are really working. No one can really give you a definite answer either. And, lesion load doesn't equate to disability either. It's such an individual thing and each of us is different with the same label - MS.

I have not been on a DMD for a few years now. I don't notice a difference other than i am not have severe allergic reactions from taking C. My rate of flares hasn't changed either. I'm still averaging 2 a year. Of those flares, I still have the same amount of lesions. It's the same lesions causing me trouble over and over.

Oh my goodness. To go by "how you feel" as "Kitty" in this thread mentioned is a HUGE and foolish mistake!!!

I was asymptomatic for several years. I felt awesome... as if I did NOT even have MS. Since I felt completely 100% NORMAL, I didn't bother getting MRIs. Even my neuro never told me I should get yearly MRIs since I was symptomatic. All he cared about was me staying on avonex (which as it turns out, didn't work at all because I progressed like CRAZY while taking it). Skipping MRIs was a HUGE mistake. Because of that stupid neuro who SHOULD have known better, I didn't bother getting an MRI for 6 years... because as mentioned, I felt like a normal person without MS with NO symptoms!

Then I finally got some common sense and went to have an MRI. I was SHOCKED at how many, I mean TONS of active new lesions I had (even had them in my brain stem). My neuro was shocked at how much my MS has progressed. My MS had progressed SEVERELY in only 6 yrs time and I didn't even know it.

I will NEVER be foolish enough to judge my MS in any shape or form by "how I feel". MS can progress tremendously without you even knowing it. Thus why MRIs are so important!!!!!!!

Sorry for the rant, I'm angry not only at this irresponsible neuro, but also at myself for not placing more importance on MRIs because with MRIs you can clearly see how much progression is occurring. Going by "how you feel" ain't gonna work! I can only hope LDN will help keep my MRIs stable.

They treat MRIs scans these days, in the past they would treat the patient and not the scan. The head neuro from Johns Hopkins said "he does this because he doesn't like to see a brain get destroyed".

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!

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 :(