Ahh yes. I know what you're going through and it's not pleasant. My neurologist and I have been going through this for the last 6 to 8 months. He has me as "worsening relapsing-remitting" since that allows me to still receive the CRAB drugs or Tysabri, while also being eligible for the chemotherapies like Novantrone. I list myself here as "secondary progressive" because I feel like that is closer to where I truly am on the disease progression continuum.

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

That's why it's called progressive. It's been others who tell me of it's advances. It took me years to change from 'it's not happening' to 'it's happening' to 'it's real'. To some it's 'mild' to others its 'progressive'. This is the misfortune and mystery. Look at My page to see how it has affected my life.
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.

Michelle I just got back from hearing the results of my newest mri, and I as well have new lesions. I am going to have to start treating this bugger, and am hoping to share with others leaving the RR scenario and entering the possiblity of progression. Advice? I'll have more later as I find out more and try some meds out, but for now, I am keeping it in the forefront of my mind that I can walk around, function normally, and am not in a lot of discomfort. That in itself is always a huge blessing! :)

I thought from the start that I was some kind of Progressive but my doctor said unless he called me RR I couldn't get Betaseron (at the time the only drug for MS).

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

I have read a post on this topic before and wondered then, as I wonder now, how a doctor determines that the RR is changing to a more progressive form? Is it determined through new symptoms? more relapses? more lesions? I would like to know if any of you out there have any answers. I suppose it depends on your doctor. I hadn't realized that the Crab drugs weren't available for Secondary Progressive. I knew that for Primary Progress no drug is supposed to help, but didn't know about not being able to get medication for Sec. Primary.

(Eloise) Michelle

I started out with RR. Then moved to Secondary progressive (SPMS) after a Motorcycle accident. My neurologist says the trauma caused me to move early. Many go 10-15 years before they move to SPMS. i found the emtional impact a big adjustment. Unfortunately there is no other way but to just cope. There are not many other options. RobinS

What symptoms (I suppose it varies) led to Secondary progressive? Or is it new symptoms and/or a worsening of old symptoms? I'm still a little confused (maybel a lot confused) on this transition from one type to the next. It scares me. Since I have had MS for a definite 6 months, but have probably walked around with it for years, I wonder if/when this transition might occur for me. I guess maybe I shouldn't worry about the future as I probably can't change too much. But, I have such a desire to learn about everything, especially MS, and I have learned so much from all of the wonderful people on this site. You are better sources of information than all of the scientific articles since YOU live this every day of your life.

Michelle: I understand the anxiety when I moved into "SPMS" it was rather disturbing and I had a hard time with acceptance all over again. Now I look to each day and if it is a great MS day I try to squezze the life out of it. It really is unimportant whether they predict it in 3,6,or 20 years after you are dx with RR. When it comes it comes whether you want it or not. And you can't live preparing for it so my advice live as if it is not on the horizon and when it comes well it comes. I deal with a day at a time with MS thats plenty of adventure these days. RobinS

Michille,
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