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    #16
    or you can think of it in "baselines" for RRMS--some people get to a terrible baseline through incomplete recovery progression, then go from that baseline to even a more terrible baseline by way of another relapse with new incomplete recovery added....that is episodical progression. they get their remission but it is with all this new incomplete recoveries added to what is "normal" for them, their new normal, their new baseline. their old baseline was bad, but better then their new baseline.

    when my doc diagnosed me he told me i had ms an i no longer had a "normal" from now on i have "baselines" instead. he said i would have a series of baselines and each current baseline would be less than the one before it....

    i believe symptom med use are not differentiated by RR or SP, so i do not think how the progression came is a requirement for the use of symptom meds to relieve as much as they can.
    xxxxxxxxxxx

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      #17
      To salamandertom and 0485c10

      Thank you much for the helpful information. The more I read, the more answers I get to my questions, the more complex and unpredictable I find this disease to be.

      I'm realizing that uncertainty is the norm and attempting to figure out what's coming next is futile. For now I'll just ride this wave and take things as they come.

      Thanks again. The best to you and and all on here.

      May God bless...
      "Tona Naze"
      Symptoms for six years plus. Dx RRMS September 2011. Drugs??? Nope!!!

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        #18
        oso49 - It sounds like you've gotten some answers but realize how unpredictable MS can be. And the fact that the course is unique for each patient makes it difficult to understand as well.

        I researched for about a year after my MS diagnosis and learned all that I could. And, I learned that this is one area of my life that I will not have control over and I have made peace with that (even though I am somewhat of a control freak).

        I am armed with knowledge and a great group of advisors/supporters here on the boards.

        Good luck on your journey - this is the best place to be to get advice and information and support.

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          #19
          Me, I'm a control freak, there has been a disease & personality mismatch with me & MS. I'm pretty sure i could file and get a no fault divorce from this disease based upon irreconcilable differences. The disease & I could each go our own separate ways, no hard feelings..

          Early on in the first year i had to tell myself repetitively as i was falling asleep.."Lynn, you can ask all you want but sometimes you just can't have the answer, but you can ask the questions as many time as you want, you just can't have the answer".

          i think it had something to do with establishing "boundaries?" There goes my chances of a no fault divorce... (once the boundaries are established).
          xxxxxxxxxxx

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            #20
            Yes, this is very unpredictable. For the first few months I kept thinking I would not let this dx dictate my life. It was *my* life afterall. I would be in control - I would show it who was boss. I relished the phrase "I may have MS, but MS does not have ME!" It was a mantra to me.

            Then, I kept getting sicker. Little by little, day by day. I have not had a day since Thanksgiving morning when I woke up with optic neuritis when I felt "okay" - I haven't even gone between moments of crappy intervals as another poster described. I am just slowly getting worse and it hasn't even been a whole year yet for me. It feels like forever, and it feels like yesterday.

            At first I waited to feel better, I would wake up every morning and hope that that day would be it. Now I just hope for an okay day without too much pain. I hold dear the fact that it hasn't been a year yet, I keep thinking, "a year ago I had no idea this would be happening to me. I still had dreams that I thought I might reach." These thoughts comfort me, I think the year anniversary will be hard for me.

            This is your journey, and whomever is in your life may not want to hear what is happening in your head - but you need to try and help them to be there with you. I tell my husband, my mom and my best friends. It is hard on them - I know it is, but me trying to be strong for them isn't fair to any of us. I would be even more bitter than I already am, and that definately cannot happen. So my advice for you on this journey, besides all the medical stuff - is to be honest with those you love. Don't shut them out, it isn't protecting anyone. I am sorry you are joining us.
            Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
            ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~

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              #21
              You are all so amazing...funny, uplifiting and honest...thank you. And don't be sorry I'm joining you...like my wife told me when I apologized to her for putting this burden at her feet...she looked me in the eyes and said, "God planned this."

              I'll just take the ride and hope and pray that the road doesn't get any bumpier than I can handle.

              Please stay in touch. My e-mail is in my profile if any would like to communicate that way.

              Take care and the best to all of you.

              Barry
              "Tona Naze"
              Symptoms for six years plus. Dx RRMS September 2011. Drugs??? Nope!!!

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