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only been diagnosed SPMS for 6 months

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    only been diagnosed SPMS for 6 months

    Hi everyone I have recently been diagnosed SPMS 6 months ago and my neurologist has me on Tysabri now on my 5th infusion I have a flair up effecting my legs and also my right arm hand now reading on this forum it seems tysabri isn't normally used for treating spms that it didn't really work in clinical trials but can help for upper torso and arms hasn't done anything yet Craig

    #2
    Craig,
    It is great that you have posted, here. I am curious about your statement that you have recently diagnosed with SPMS ! What happened to lead you to this diagnosis? Did you live with RRMS for some years ? Are you surprised that there has never been any drug treatment for 'Progressive' MS ? The fact that you are getting Tysabri infusions leads me to wonder if your neurologist is an MS specialist . Is this correct?

    Comment


      #3
      Hi dastardly,

      There is some confusion here.

      Relapsing/Remitting MS (RRMS) can overtime transition to Secondary Progressive MS (SPMS). You can't have SPMS without having RRMS at some point.

      Many times the Insurance Companies will not pay for the DMDs/DMTs when a patient transitions to SPMS. For this reason a Neurologist will leave a patient as RRMS so they can use a DMD/DMT if they so choose.

      If you are having an exacerbation (relapse, attack, flare-up) it is best to let your Neurologist know. Steroids may or may not be needed. Not all exacerbations require steroids.

      By definition an exacerbation is: New and/or old symptoms lasting continuously for more than 24 hours and separated from the last exacerbation by 30 days. Symptoms that are intermittent are not considered an exacerbation.

      Even on DMDs/DMTs exacerbations can happen as can progression. There simply is no guarantees with this disease --- on or off treatment.
      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
        Originally posted by dastardly View Post
        Hi everyone I have recently been diagnosed SPMS 6 months ago and my neurologist has me on Tysabri now on my 5th infusion I have a flair up effecting my legs and also my right arm hand now reading on this forum it seems tysabri isn't normally used for treating spms that it didn't really work in clinical trials but can help for upper torso and arms hasn't done anything yet Craig
        Yes; I am confused too, as are others who have responded to your post.

        If you were recently diagnosed SPMS, it appears that one of the following must be true:
        • You had RRMS before. Either you were diagnosed with it.
        • Or, you had RRMS for years, but were undiagnosed for a long time and didn't know it. By the time you sought a diagnosis 6 months ago, it had already progressed to SPMS.
        • You just recently went to a doctor who, mistakenly, diagnosed you with SPMS instead of RRMS.


        I don't know much about Tysabri. Sorry I can't answer those questions. i do know that most of the DMD's that are prescribed for RRMS are often not effective with SPMS.
        Last edited by Mamabug; 03-20-2016, 01:06 PM.
        ~ 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.

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          #5
          Hi Guys sorry about the confusion yes I have had RRMS for over 20 years my DR said I have "transitioned" to SPMS not "diagnosed" it was late and I chose the wrong wording I can't remember the exact words he used as my appointment was 6 months ago and yes I contacted my DR since about new flair, I have had it for a while been getting progressively worse over the last few weeks Im having trouble walking, I just finished a treatment of solumedrol to get legs working again as it worked once before hope it works again , at the moment my Right hand bottom 3 fingers hand and lower arm are numb and my right leg is having trouble following me around sorry again about the confusion Craig

          Comment


            #6
            Thanks for the clarification, Craig! It makes perfect sense now. I also went about 20 yrs before I transitioned to SP, but I am not on any meds now as I don't have flares.

            This article from the NMSS will help you understand SPMS more by reading the headings of articles on the left hand side. http://www.nationalmssociety.org/Wha...Progressive-MS

            I highly recommend seeing a physical therapist with this transition. It has helped me numerous times. Also if your legs and walking are affected, you might want to try using the medication Ampyra. Read more here http://www.msworld.org/forum/showthr...n-about-Ampyra

            And if you are feeling unstable while walking and want to stay safe from falls, you might want to start using a cane or walking sticks.

            In the mean time, l hope the steroids help you this time around.
            Take care of yourself!!
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

            Comment


              #7
              Hi Craig
              wellll as far as I have been told by my MS neurologist and my own research there are no treatments for SPMS unfortunately....ok that being said have you looked into Lyme disease and its link to MS? another idea would be to look into LDI (Low Dose Immunotherapy)..this is pioneered by Dr. Ty Vincent...google it.
              I was diagnosed with SPMS in 2010. I did two CCSVI procedures on my own accord. I started looking into Lyme disease as the trigger for my MS and was diagnosed with late stage lyme disease from blood tests done via Igenix labs in Sept 2013. Since there were no proven treatments for SPMS I started treatment for Lyme disease via a medical Dr. in Platsburg NY. I stopped going to her last June as it was breaking my bank. I am also being treated for Lyme by my ND here in Ontario Canada. I have been on LDI since last August 2015...
              I hope I have given you some food for thought or at least personal research...
              Stay strong....
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                #8
                Originally posted by Seasha View Post
                Thanks for the clarification, Craig! It makes perfect sense now. I also went about 20 yrs before I transitioned to SP, but I am not on any meds now as I don't have flares.

                This article from the NMSS will help you understand SPMS more by reading the headings of articles on the left hand side. http://www.nationalmssociety.org/Wha...Progressive-MS

                I highly recommend seeing a physical therapist with this transition. It has helped me numerous times. Also if your legs and walking are affected, you might want to try using the medication Ampyra. Read more here http://www.msworld.org/forum/showthr...n-about-Ampyra

                And if you are feeling unstable while walking and want to stay safe from falls, you might want to start using a cane or walking sticks.

                In the mean time, l hope the steroids help you this time around.
                Take care of yourself!!
                --- Ampyra is very very expensive. It has shown great success but in only 50% of those who take it. The company give a one month trial free to see if it will work for you. The drug company doesnt have any financial support for this drug so it is full fee.... In Canada it cost about $2000 a month... I wish I could take it as my mobility is my absolute worst symptom but alas I cannot afford it...it is like the carrot being dangled in front of me and I am starving...

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