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    SPMS

    I was officially diagnosed with RRMS in 2008, though I had symptoms and flares for years, not knowing what they were. For those who were diagnosed with RRMS, how many of you have tranisitoned to SPMS? How long did it take to transition? How did you know you had prgressed?

    I've been noticing symptoms that concern me. My left leg is noticably weaker than it used to be (also the leg that has spacticity). I am having a lot of trouble with balance (using a cane, currently). I can't control my right leg very well. I have to guide it into pant legs. Having spasms in legs and arms. Cog fog seems worse.

    I know we all have different paths and symptoms. I was just curious about your individual journeys. Hope everyone had a great holiday. I'm thankful for this site and all the nice people who have helped me through some rough times.

    #2
    I was officially dx with RRMS in 2003, about 20 months after my MS began with a bang.

    I started suspecting SPMS about 3-4 years ago. I hadn't had an flare since 2014, yet I continued to decline.

    Almost two years ago, I began to use a cane when I leave the house. I suspected that I might be in a wheelchair in a year or so. Almost18 months ago, I changed my diet significantly and made some lifestyle changes (got rid of plastics and microwave in kitchen, began using non toxic personal care products, added meditation and yoga, increased exercise, etc). My symptoms have remained stable or improved in a few small, incremental ways.

    You might find this old thread interesting. I asked different questions than you did, and there's not a lot of details in the responses, but we're all sort of at a similar place.
    https://www.msworld.org/forum/showth...ears-or-longer
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
    .

    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

    Comment


      #3
      Hi kittysmith.

      From a diagnosis of RRMS to SPMS was 28 years. My Neurologist determined I was SPMS based on the length of time I have had MS in combination with a stable (no change) in my Neurological exam and stable MRIs (no change).

      The longer you have RRMS to higher the change of transitioning to SPMS.

      If you haven't already done so I would suggest working with a Physical Therapist(PT). PT can be helpful in improving balance and leg weakness. PT and exercise can also be beneficial for spasticity and pain.
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

      Comment


        #4
        Thanks, Mamabug

        I appreciate your response. This disease is so confusing and iritating. I see my MS doc at the end of January. I love my Dr, but he tends to want to throw new meds at my symptoms. I don't think more medication is helpful. It certainly doesn't help my balance (lol).

        I feel like I've had a pretty easy time so far. Slowly, I'v been seeing symptoms that don't come and go. The weakness is concerning. I hope he will be able to help me understand these symptoms.

        Comment


          #5
          Originally posted by kittysmith View Post
          I love my Dr, but he tends to want to throw new meds at my symptoms. I don't think more medication is helpful.
          Yeah; that's about the only tool traditional medicine has in its toolbox. You might want to look into Terry Wahls and the Wahl's protocol. My changes are similar to hers. Diet and lifestyle changes might manage symptoms better than meds. Food is medicine. I wish I'd made these changes years ago.
          Last edited by Mamabug; 12-27-2019, 12:40 PM. Reason: Corrected spelling and typos
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
          .

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

          Comment


            #6
            Thanks

            Originally posted by SNOOPY View Post
            Hi kittysmith.

            From a diagnosis of RRMS to SPMS was 28 years. My Neurologist determined I was SPMS based on the length of time I have had MS in combination with a stable (no change) in my Neurological exam and stable MRIs (no change).

            The longer you have RRMS to higher the change of transitioning to SPMS.

            If you haven't already done so I would suggest working with a Physical Therapist(PT). PT can be helpful in improving balance and leg weakness. PT and exercise can also be beneficial for spasticity and pain.
            Thanks, Snoopy. I will have lots of questions at my next appointment.

            Comment


              #7
              Originally posted by SNOOPY View Post
              The longer you have RRMS to higher the change of transitioning to SPMS.
              Can you explain this statement please Snoopy, not sure I understand it.
              The future depends on what you do today.- Gandhi

              Comment


                #8
                Hi kittysmith,

                I have wondered myself about SPMS. But my progression really slowed when I started Tysabri, including cogfog. Still have it, but about the same level.

                I also have spasticity and had a period of leg weakness and balance issues, with falls. My neuro prescribed PT for it. I wasn't using a cane, but was on the path to one. Thankfully, PT helped. It was a combination of stretching, strengthening, eliminating a muscle imbalance I developed from my gait, and balancing exercises.

                I try to keep up the routines to a degree. When I stop, I regress some. But after all the PT I have had over the years it would take me 3 hours to get thru all exercises! So I do a few key ones each day and vary other ones, rotating thru.

                So it may be worth asking your neuro for PT script. If it doesn't help, they can still teach you the proper way to use a cane, safe transitions from lying own, sitting standing, steps, etc...
                Kathy
                DX 01/06, currently on Tysabri

                Comment


                  #9
                  Originally posted by Boudreaux View Post
                  Can you explain this statement please Snoopy, not sure I understand it.
                  That didn't make sense to me either Boudreaux

                  MS is still known as a progressive disease, although some don't progress. Since MS is progressive the longer you have MS the higher the chance of transitioning from RR to SP.

                  Hope that made more sense to you.
                  Diagnosed 1984
                  “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                  Comment


                    #10
                    Originally posted by SNOOPY View Post
                    That didn't make sense to me either Boudreaux

                    MS is still known as a progressive disease, although some don't progress. Since MS is progressive the longer you have MS the higher the chance of transitioning from RR to SP.

                    Hope that made more sense to you.
                    Got it. Basically, no one gets cured and we have a greater chance of getting worse as opposed to getting better.
                    The future depends on what you do today.- Gandhi

                    Comment


                      #11
                      I was just diagnosed a few months ago with RRMS, but I think I progressed to SPMS about 5 years ago. My understanding, without it being spelled out, is that my doctor has me listed as RRMS because that's the only way I can get Ocrevus right now.

                      Comment


                        #12
                        Originally posted by Boudreaux View Post
                        Got it. Basically, no one gets cured and we have a greater chance of getting worse as opposed to getting better.
                        Just to clarify, If you are getting worse because of a relapse in either RRMS or SPMS, you can get better.

                        Related to the transition from RRMS to SPMS, this is directly from the NMSS website:

                        "Prior to the availability of the approved disease-modifying therapies, studies indicated that 50 percent of those diagnosed with relapsing-remitting MS (RRMS) would transition to secondary-progressive MS (SPMS) within 10 years, and 90 percent would transition within 25 years.

                        While MS experts agree that the medications have an impact on disease progression, it is too soon to tell the extent to which the disease-modifying treatments alter or delay the transition to SPMS."
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #13
                          Originally posted by SNOOPY View Post
                          Hi kittysmith.

                          From a diagnosis of RRMS to SPMS was 28 years. My Neurologist determined I was SPMS based on the length of time I have had MS in combination with a stable (no change) in my Neurological exam and stable MRIs (no change).

                          The longer you have RRMS to higher the change of transitioning to SPMS.
                          Snoopy,
                          Forgive me for beating a dead horse, but even though it is somewhat ordained that we with MS will progress, you are stable across the board. Why would your label be anything other than “stable”? Just because you had MS for X amount of years? That doesn’t make sense to me.

                          As was also alluded to in this thread, there is also a kind of unwritten rule that doctors don’t like to officially upgrade us from RRMS because we could get cut off of meds that may work for us.

                          In my opinion, these MS classifications do more harm than good. How do these labels help us? I am not being facetious...I am honestly pleading ignorance!
                          Tawanda
                          ___________________________________________
                          Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                          Comment


                            #14
                            Originally posted by Tawanda View Post
                            In my opinion, these MS classifications do more harm than good. How do these labels help us? I am not being facetious...I am honestly pleading ignorance!
                            Hi Tawanda ~

                            MS has different disease courses. It's just the way it is.

                            RR behaves differently than PPMS. Relapses with remission vs steady progression.

                            Drugs that may be highly effective for relapses (RR), are not as effective for progression that is driven mostly by neurodegeneration (PPMS).

                            Hope this helps.

                            Take Care
                            PPMS for 22 years (dx 1998)
                            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                            Comment


                              #15
                              I found this article to be helpful in regards to progression vs. stability -

                              "What’s in a name?

                              Regardless of how your MS is labelled, there’s still no saying how the condition will progress. After all, each person is unique and our bodies can react very differently to the same condition. This means that while experts find the different terms to describe MS useful, you might find your symptoms don’t actually fit so neatly into any of the boxes. Ultimately, your condition is as unique as you are, and the way in which it is managed should be tailored according to your specific symptoms and your personal experience of the condition – and your preferences. Your doctor should recognize this and work with you and the rest of your healthcare team to ensure you can get on with leading a happy and productive life."

                              And in regards to SPMS-

                              "As your condition progresses, you may find you have more difficulty getting around, but there’s no way of saying how quickly these changes might occur or to what extent. The majority of people with MS do not become severely disabled. In fact, two-thirds remain mobile, although they may need a walking aid. While there is currently no ‘cure’ for any form of MS, SPMS symptoms can be managed with integrated care including treatments, physiotherapy, exercise and dietary adjustments. A holistic approach is key to maintaining comfort and productivity, and enhancing quality of life which can be supported by tracking your symptoms regularly to help you discuss your MS with your doctor"

                              https://www.livinglikeyou.com/articl...anding-your-ms
                              1st sx '89 Dx '99 w/RRMS - SP since 2010
                              Administrator Message Boards/Moderator

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