Benign M.S.

[bag351]

I was diagnosed with M.S. during a clinical exacerbation. There were multiple lesions in the "right" places of the white matter. The Evoked Potential was normal; the LP was normal. I started on Betaseron within a month of the diagnosis. I have symptoms from the old lesions but never had another clinical exacerbation. I stopped taking the Betaseron after 6 years (two months ago). Two more MRIs after diagnosis showed no new lesions. The second MRI (a year after diagnosis) looked like "classic M.S." (I was told by an M.S. specialist). The third MRI (last year) showed some of the lesions were smaller. Question: by whatever criteria is being used now, is this M.S.? Also, why silent exacerbations that happened but stopped after first clinical exacerbation?

[HVAC]

Benign as I understand it a diagnosis after the fact. Mostly when people are dead. They look a brain tissue of people who had very little symptoms and find lots of plagues. Or a Neurologist follows you for decades and you truly do not have progression.

MRIs show so little. There is this misconception that MS activity shows up on MRIs. MRIs only show a small amount of the damage. They now know a lot of damage is in the gray matter.

Damage happens without symptoms in MS. The question is are your lesions really getting smaller or not enhancing which means they are degenerative and no longer inflammatory.

Every case of MS is different. None are predictable.

I have a slow progressing degenerative form of MS. I have had symptoms since early childhood such as permanent double vision. Other brain stem involved symptoms and cognitive issues. I slowly have had weakness and gait problems but they were so gradual I did not know I had an issue. Finally in 2007 doctors became concerned.
My brain MRI does not change, has few enhancing lesions so I am labeled PPMS.

Alex

[shermay]

I totally agree with Deb, benign is a cop out.  MS can and does turn on a dime.

I was doing great from my inital dx 10 years ago, and then suddenly I was hit with major stress, and bang MS reared it's ugly head in a big way:/

You need to get back onto DMD's, to help to keep MS at bay, and to reduce the number of flares and size of lesions.

Debs

[Deb61]

Why did you go off of your Betaseron?  Did your neurologist suggest this?  There's no such thing as benign MS.  MS is so unpredictable that it can turn on a dime into something aggressive, or you can experience relief from attacks for years (like for you).  I don't think anyone knows why this happens for people this way.  Maybe the Betaseron was keeping you from experiencing attacks.  The purpose of the medicine is to just that.  

When I started my DMD, my neurologist told me that you could go a lifetime without any more attacks--he has one patient that has had this happen with.  She's still on her Copaxone and doing great.  

My last MRI showed lesions even disappearing or getting smaller.  This can happen, and it's what everyone on this forum hopes for.  I have experienced some things that haven't shown up on the MRI, however.  I've had TN, optic neuritis, and hearing loss.  None of these lesions were shown on the MRI.  

You have brought up some good questions for the forum--thanks for doing this.  I hope others will help by chiming in.  

Take care, I hope you go for another six years at least without exacerbations!

Deb