Thread: WTH IS AGGRESSIVE MS
08-14-2011, 03:34 AM #1
WTH IS AGGRESSIVE MS
I was DX in Late OCT. 2010 found my Neuro in Nov.2010 and have liked her ever since...(except I have never really understood what she means by aggressive MS.)
Here is the short of me...I have 7 brain lesions and so many spinal lesions my Neuro says she won't count them. I started Beta in Dec. and had my first round of steroids in Nov. I had my next round in Jan, April(?), June, Aug. I stopped Beta in late July do to a med reaction.
In my last MRI I have a new spinal lesions and my brain stem lesion had grown in size...I guess it was already large...hence the steroids in June because it was still active from the flare in April(?).
So now my Neuro doesn't know what to do with me and is sending me to what is the closest "MS" Neuro in my area...he does studies and trials and stuff...
I know the I should be grateful my Neuro was honest and said she didn't know what to do with me. BUT...REALLY< REALLY?
She said that I'm VERY AGGRESSIVE MS ...so WTH does the mean? thats what I'm asking all of you...she said I'm RRMS but can i be both? my appointment isn't till SEPT 8th and the wait may kill me..
thanks for reading my book Allyson
08-14-2011, 05:10 AM #2Registered Member
- Join Date
- Jul 2011
What does "aggressive" mean? Depends on who you ask...
could mean a lot of lesions, could mean developing lesions in a short period of time, could mean exceptionally large lesions, could mean being very symptomatic or to a non-MS specializing neuro, it could simply be anything they don't see regularly.
An MS neuro, who has far more experience with MS than a regular neuro, would be in a better position to tell you if you are truly aggressive and why.
08-14-2011, 06:09 AM #3BigA Guest
I think a Doctor who says something is beyond their experience is a good doctor. Go to the specialist. If it's still early days so far, there are heavier measures which can be taken, i.e. Gilenya, Tysabri and even mitoxantrone.
But it is best to evaluate as early as you can with an expert.
08-14-2011, 01:03 PM #4Registered Member
- Join Date
- Apr 2007
I'm geussing that RRMS can be both be described as Aggressive by where the lesions are located (when they have a greater chance of causing permenant disability) & how Active the ms is.
the doc cannot do any thing about how aggressive it is, but there are medications of different strength levels to do something about how Active it is. since your ms is aggressive in the locations it targeting, the doc is referring you to someone that has more experience with the stronger meds for slowing how active it has been. it doesn't sound like he wants to do a "trial & error" to hit upon the right med to slow how Active its been, when your ms has been Aggressive in its choice of location.
takes a doc with a lot of integrity to make that call right away when betaseron failed to reduce its activity.
you found a really good doc the first time, i hope your next doc is equally as good and slows your ms down with the first med chosen.good luck your ms will soon be under better control.xxxxxxxxxxx
08-14-2011, 11:28 PM #5Registered Member
- Join Date
- Jul 2005
IMHO, "Aggressive M.S." is a very subjective term (as are most terms that apply to this disease), just the same as "Benign M.S."
I think most of us, especially newbees, would prefer the term "Benign". My SIL has had M.S. for 30 years, and had a flare so bad they thought she needed to go to hospice. Well, that was about a decade ago, so there is your proof that there are no definates with this disease.
The first year was the hardest for me. Things got better once I got past all the creepy semantics and just started living life and raising my daughter.Tawanda
Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994