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.
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.
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.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
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.
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
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.