Multiple Sclerosis (MS) Support Group

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tarabunnyears 04/10/2013

Ok, so I was diagnosed with relapsing/remitting.

But the last 2 years i son'e feel like I am having attacks, but a stead worsening. It just gets worse week by week.

Then I read this...

"The name for this disease course comes from the fact that it follows after the relapsing-remitting course. Of the 85% of people who are initially diagnosed with relapsing-remitting MS (RRMS), most will eventually transition to SPMS, which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without any relapses (also called attacks or exacerbations)."

So, how do you get the SPMS diagnosis? My doctor does not listen to me and does not know that much about MS.

Does having the dx change make a difference?

I feel lost. I feel I keep getting worse and no one cares.

deleted_user 04/10/2013

Is there any way you can see a neurologist specializing in MS? I believe the treatment does change between RRMS and progressive MS, but there are many different options.

bleedinblue 04/10/2013

I was dx'ed in Sept 2001 was on copaxone was still active. Then had an attack last day of 2008 that attack wrecked my right side. My neuro told me I had progressed to SPMS now in w/c not sure about treatments I have done 2 doses of rutaxin not impressed with results tho.. Hang in there I hope things go well for you.

LilMargie 04/10/2013

My doc tells me that about 10 years after first attacks/diagnosis, one can expect to be diagnosed Secondary Progressive. I am Secondary - which means I don't have attacks anymore and my disability just keeps progressing.

What you should know is that many doctors don't want to give you that formal diagnosis because there are NO MEDS for the progressive stage other than treating symptoms. And, once the insurance companies see the SPMS, they won't pay for the flare-up meds any more (i.e., Copaxone, Rebif, Tysaibri, etc.).

I wouldn't push it if you want to stay on the meds for a while.

Kayce1970 04/10/2013

There is a difference in the med's they use (according to my MS Doc)
I asked the same ? of him.
Some of the drugs are made to stop attacks from happening in RRMS and some of the drugs are made to slow down the gradual disability that come from SPMS

tarabunnyears 04/11/2013

Thanks everyone. I just don't want to stay on Copaxone if it is not doing any good.

I have been searching for an MS specialist for years. None around here. I cannot afford a hotel to travel to one. But I think I found one I can get to with a friend living nearby where I can crash.

Hope to get answers soon.

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