Waiting on Copaxone a smart choice? Benign MS?

Hi Everyone,

I had my follow-up appt today at the Rocky Mtn MS Ctr.
I have no NEW lesions from my previous brain MRI that I had 9 months ago. But, all the tests/labs for all the other things it could be came back negative.
My MRI showed 6 brain lesions, 3 black holes, and then I had the lesion between C4-C6 and another between T9-T10.  

The neurologist had pretty much said last time that he thought I had clinical MS because I've had 3 different attacks/relapses - 1 from my spinal one, and 2 separate bouts of optic neuritis (1st my left eye, then my right). He was just going to wait to label me, until all my tests/labs all came back.

Now with no changes in my brain MRI, he's wondering if I might have benign MS. I thought there was really no such thing. No one knows how you'll end up for sure.

He said he'd start the Copaxone now if I wanted to, but really suggested that I wait until he runs another brain MRI on me in another 3 months. (At first he was going to wait 6 months, but decided on 3 months after he did my exam and notice maybe more weakness on my left leg).

What does everyone think of my decision to go with his suggestion to wait and see regarding starting Copaxone?
And what about benign MS? I told him sometimes I feel like I can barely walk up hills and it feels like my legs are weighted down like if I were in a swimming pool...amongst all the other symptoms that I have. I guess it's only 3 months, but I'm starting to feel kind of frustrated again.

Thanks,
Kelly

[Quixotic1]

Hi, Kelly,

Well, clearly there is such a thing as Benign MS.  The problem is that we won't know if that is what you had until the end of your life.  They have tried and tried to find the marker(s) that tell us who will STAY benign and who will progress.  Currently, the odds are in your favor that, if you go 15 years with minimal disease (not just minimal MRI evidence, but minimal symptoms that you recover well from, it is HIGHLY likely that your disease will stay benign.

The problem is obvious.  Once you go that long, it is also likely that the DMDs won't help much if the MS turns on you and becomes more aggressive.

The Mayo Clinic is a great believer in the entity of Benign MS.  For a long time they recommended that we withhold DMDs until the MS showed a more aggressive face to us.  That was about 2003 to about 2007.  Then the data from some of the longer term trials began rolling in that showed the DMDs that we have now were most effective the earlier they were used in the disease course.  The rest of the neurologic world shut down the pressure of the Mayo Clinic to push this idea.  It could be that your neuro believes the Mayo line on this.

It is an ethical, financial, and personal decision if someone wants to take the chance that their disease will never get aggressive.

I can point you toward two studies that looked at older people who had been designated "Benign" before the advent of good MRIs, so this was done on the basis of symptom severity. The first one looked at 70 or so people who had been diagnosed as benign.   After 20 years of disease about 30% of Benign MSers needed assistance of some kind to walk.  They included can, walker and wheelchair.  Almost one out of three.  Personally, by the time I needed a cane, I didn't feel anything was "benign".

The second study looked at a different group for signs of cognitive dysfunction - something too rarely looked at in early MS.  They found a similar thing.  After about 20 years about 30% should cognitive slowing.  Mind you, for a long time it was felt that people over 50 did not get MS, so they were looking at people younger than 60.  A whopping 12% or so showed "Significant" cognitive problems.  Okay, this is one in eight, but it is hardly worth ignoring.  So, it looks like, the disease does eat at you right along in a large group of people.

Now, many of us have been faced with the designation of Benign disease based on our MRIs, yet our physical and mental function has been in the loo.  I scream "Foul" at this stupidity of ignoring what the patient is going through in favor of "Counting Lesions."  If your disease is seriously affecting your quality of life, then IT AIN'T BENIGN, SISTER!

Your neuro has plenty of people who believe they can predict when a person's course will stay benign.  The problem is that no studies have shown this.

I dont remember your history.  If your symptoms go back 15 years and everything is still mild, your neuro has a point.  If you are below the 7 year mark, then I have read nothing that supports that we really know who will stay mild.

That is my thinking on Benign MS.  One can only look back and say, "Yep, it never got bad."

Quix

[kelly97]

Thanks Quix.

My symptoms have never gone away completely (except maybe the symptoms from my eyes, and the month and a half between my first onset of symptoms over a weekend that went away and then presented again a month and a half later). Other than that, I've had symptoms now for about a year and a half that have seemed to somewhat progress over this same time period (with worsening of symptoms and new symptoms).  Definitely far below the 15 yrs that you were talking about.

Even right now, it sometimes feels like I need a cane NOW.  If I feel this way already, I really wonder how I'll be just 5 yrs down the road.  And when we go for walks, my partner has to walk much slower with me than before. (My legs feel so weak, and it feels like I need to lift my left leg up higher so that my foot will clear the ground). I don't know - this benign stuff, just doesn't feel like it fits me. ?????

Thanks for sharing the studies. Those are sure something to consider!
In reality, I'm not even for sure if I can afford the Copaxone. I don't know how much insurance will pay and how much I'll have to pay out of my pocket.  

I wonder why doctors still try to bring up that perhaps it is benign when we won't know until it's too late if we choose to wait on the DMDs?