
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.
Moving from Relapsing/Remitting to Progressive?

deleted_user
I thought I had been doing well with my MS diagnosis over the last three years until my neurologist changed my relasing/remitting status to a progressive MS status. Going through all the stages of grieving again, okay, not at acceptance yet. Has anyone else had their status change? How did you deal with this change? Thanks so much for any advice! God Bless!
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I knew my condition was worsening, and I had been trying to get my head around the progression for a while, so for me, having the conversation with my doctor was like reading the handwriting on the wall. I still get angry, sad, and afraid. But, I still have good days too.
How do I cope? I've learned not to obsess about the future with lots of "what ifs." When I moved, I made the decision to make my house accessible, so that I don't have to worry about my physical surroundings as much. I write a lot. I particpate in groups like this and try to share what I've learned. I just go about my day and try not to wallow in my fears -- though I don't ignore them either. It's all I can do, and it's enough.
-Karen
It has cost me a job and friendsips. More to come. It is all-encompassing: body, mind and emotions. I 'deal' with it everyday; 'accepting' took awhile.
Thousands go through the same phenomenon. MS does that. Karen's comments are real. This discussion group is a good place to learn, share and vent.
I never had a clear demarcation of symptoms just worse balance or numbness. I don't think Doctors really know and to tell you the truth I don't think it really matters (doesn't affect treatment). Except for making some patients (and maybe the Doctor) feel better the only name that really matters is Multiple Sclerosis (anything else as long as it is not primary progressive is pretty irrelevant).
Larry
(Eloise) Michelle
I guess most people consider that I have a bad attitude about what type of MS. Except for chronic progressive, what does it matter. You have a disease that won't go away (hence chronic). No cure, a choice of drugs that at least for me made me fuzzy brained and mildly sick (except Copaxone and LDN). For awhile IV Solumedrol had some effect, then it stopped working.
So, what does a lable of R/R or S/P or W/P matter. Will it affect your therapy. If there is something better than you're doing, why wait for a name?
Personaly I think it is a "crap shoot". I don't think it will change you treatment, just gives us more to think about. It seems to all depend on your doctor. Can you point to a book or article to exactly define the types of MS with how to identify them.
Find a therapy that works for you and stop worrying about the type of MS (won't change anything, anyway.
Larry