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.
There are people who are progressive when diagnosed, but that does not seem to be you. Because you have more active lesions. You seem to be someone who responded poorly to two meds when there are other medication options out there.
Here is a site for diagnosing SP, note it is not based on the ineffectiveness of Med to control lesions or Relapses...it is increasing "disaablity" despite the meds.
http://www.mssociety.org.uk/about_ms/types_of_ms/what_is_spms.html
Actually as SP approaches relapses decrease and disability increases despite the meds. Both RR & SP cause disability. They just do it differently RR causes disability in an episodically through incomplete recovery of relapses. SP is continuous. The goal of the meds are to lessen the # of relapses when the incomplete recovery can occur. Evey relapse is associated with an active lesion-some active lesions may be too small for an MRI to measure in case anyone gets angry that they had a relapse and there was no active lesion. Maybe they were too small to be picked up by MRI but that is not your case. Your lesions are visible on MRI. And they are gonna control to the best available med that is out there the possibility of a relapse to prevent disdability from incomplete recovery.
There is a fantastic chart that shows the progression of RR to SP.
It shows how lesions develop,relapses and disability accumulate through each stage. Take a look at it. And even print it out so you can look at it a few times over a month. I swear I saw more & more things in it each time I looked at it. A person really needs to look at it a few times to understand to understand the residual affects left after a relapse, how they are below a "clinical threshold" meaning not visible and then they stat to be above the "clinical threshold" You can find that graph here.....its half way down this website labeled it's the second one of two graphs that begin with the label "MRI and Clinical Pattern in MS" To help you understand them you might need to understand the two words "Inflammatory" & "Neurodegenerative". The RR stage with active lesions & relapses is Inflammatory. Relapses happen because of inflammation associated with demylenation of the nerves. In SP relapses, thus inflamation no longer happens, the damage is directly to the nerves or "Neurodegenerative".
http://www.mult-sclerosis.org/msprognosis.html
If you want to go even further that that about SP, in this site it lists signs of RR transitioning to SP. Under Multiple Sclerosis-It's Types and then under Relapse Remission it lists 11 signs that RR is progressing to SP.
http://www.thjuland.net/0site.html
Knowing what to expect is sometimes very calming. These are some sites to look at so your not going into it blind. But to be understood is that medicine is advancing very rapidly & you are young so you will benifit from these advances. So you may not get to the point where it is Neurodegenerative and not Inflamatory any more.
BTW here is a link to a video on Tysabri on the nmss site.
http://www.nationalmssociety.org/multimedia-library/webcasts--podcasts/tysabri/index.aspx
PS............nnyl1 is an excellent source of info and support...........listen to her..............
Some people got hostile to me when I kept saying I can go back, but I needed to be able to tell myself that it wasn't a one way street. I wasn't eliminating any treatment options because of Tysabri. Perfect treatment options do not exist for MS yet. It's just selecting the "best" treatment option that works "best" for the individual. They all work to a degree, some better and some lesser in an individual. it's just the best one for the individual.You have been tested on two kinds.
You were tested on an Interferon (Betaseron but it also could have been Avonnex, or Rebif but it was the interferon Betaseron for you), & glutimer acetate(copaxone): Two kinds.
Now your doc wants yo to try a third kind.
Those three kinds of meds(Interferon,glutermer acetate & Tysabri) function in three different ways to control lesions/relapse.
Of the three, it may be the case that the interferon(betaseron) controlled relapses the "best" for you although not perfect. That might be the case? None of them are perfect its just selecting the "best one" for you. There are people who tried Tysabri, it wasn't the best for them and they went back to Copaxone, Rebif, betaseron, Avonex. Some even went to an immune suppressent like Novatrone, but they didn't eliminate any treatment options because they tried Tysabri.
Novantrone is a cancer cooker that they use to shut down MS activity by basically slamming the immune system hard. It can only be used a few times during your life, however, it is a big nuke in terms of stopping the damages that happen due to active lesions.
That plus a course of IVMP (Solumedrol) can usually stop any active inflammatory activity completely, and let the interferons and copaxone do their thing better.
Good luck.