Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I do not think the transition is sudden.
Sorry that you are feeling rotten.
I'm on Rebif, had a few bouts of depression but not terrible, just a funk from learning to live with this stupid disease. It didn't last longer than a couple of months.
Have you tried other things besides Avonex? Maybe you should at least think about something else before giving up on the interferons altogether.
Well, think about either talking to a therapist or get on anti-depressants too, if you are feeling this way too long, okay?
Good luck.
http://www.mult-sclerosis.org/secondaryprogressivemultiplesclerosis.html
http://scamparoo.wordpress.com/2008/07/17/secondary-progressive-multiple-sclerosis-spms-is/
Diagnosing SP.....
http://www.mssociety.org.uk/about_ms/types_of_ms/what_is_spms.html
11 signs of progression. This is a real good site for info. The signs of progression are listed under 'Its Types' & then under RR.
In case the link doesn't get you to exact place.
********************************************
This is the most common beginning phase of MS. However, 50% of cases will have progression within 10 - 15 years, and an additional 40% within 25 years of onset; as the disease evolves, into the Secondary/Progressive phase. The clinical signs of progression are:
*EDSS score in 4-5.5 range
*Increasing relapse rate
*PolyRegional relapses (more Functional Systems involved)
*Incomplete recovery between relapses (progression)
*Decreasing response to Steroids
*Decreasing numbers of enhancing lesions
*Decreasing NAA levels on MR Spectroscopy
*Increasing T1 HypoIntensities ("Black Holes")
*Increasing MRI burden of disease
*Increasing Axonal pathology
*Increasing Spinal Cord lesions
*****************************************
The scary part is how fast is going to be. My doc want's me to switch to Tysabri, which probably isn't needed if I stay where I am.
But how FAST do the signs of progression happen? I seem to have chaged every year in Spring I notice, after I get outside when the ice & snow is gone. How much more will it be next spring? Is this Tysabri worth it, to prevent next spring.
http://www.thjuland.net/0site.html
The progression list is under under 'It's Types' then 'Relapsing/Remitting MS'
Another person here describes a slow decline into SP. That would be Positive MS Support founder Morgain71.
Also keep in mind that it is a label it doesn't change what is happening, but it most definitely changes WHAT medication is covered in the future. Diagnosing SP may tie a doc's hand as far as treatment options go. And who knows exactly HOW their hands will be tied in the future, insurance rules change so much! So it's not a good thing to change the label too soon, if at all.
RRMS is in 2 stages:Inflamatory(RR) & Nerodegenerative(SP).
MRI is unable to measure neurodegenerative damage but is only able to measure inflamatory damage(lesions).
So I think decline is the key withot evidence of relapse or new lesions.
I've been lurking on the nmss.org board, under the Secondary Progressive group. Lot's of post's there that confirm what I read.
That diagnosing procedure recommends evaluation for decline at 3 mo. intervals
My last MRI showed 1 active lesion, and a small progression in lesion load. I was so relieved. The MRI before that showed no active disease process or change. Along with visible decline.