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RRMS to Secondary

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    RRMS to Secondary

    Today I went to see my neuro and he told me I was Secondary. When I got my DX in April I just assumed it was the regular RRMS as I did'nt even know that there were different types of MS until I got the DX and started visiting this site. This was quite the blow today and what peevs me is that my neuro said if one of the other neuros would have given me a proper DX and started me on a DMD that my outcome might have been different.

    I would have to say that when you go to a MS specialist and he tells you that you have had MS for years and can't understand why one of the other neuros had'nt given you a DX that the system is broke and if there is any question about a DX the neuro that is not sure should be mandated that you you be sent to a MS specialist.

    At this point and time I have no idea what to expect as I've pretty much have done all the reading I can on RRMS and just thought that I would be there forever and not be slapped yet another time by MS. I guess I just need to let it sink in and start reading what this DX means to me as I know so little about what Secondary is and what effect it has on people and what the outlook is. Nothing like getting bad than worse news in just 6 short months, but on the other hand I know there are lots of people worse off than me and I should count my blessings Thanks for listening

    my heart max

    He told me the same thing when I saw him in Sept. I'm 32...I'll be 33 in Nov. When he said it I kind knew it though. From the start for me my old Neuro couldn't stop telling me how aggressive and advanced I was. She meant as far as my lesions on my spine I believe.

    I just took a deep breath and said OK Dr. Sullivan where do we go from here.

    So we are going to try Gilyena. I have been off meds now since end of July and except for my eyes and not driving I'm still in the same slow slide I've been in since last Oct. which was my DX.

    My heart and my love Max because I know you have a plate full and this is another blow. But I know that you said some Very kind things to me and I know you have a big heart so let us help fill your ache with kind words.

    We may meet one day in the waiting room and never know it but I will always smile at everyone just in case its Max!!!

    DX 10/10, JCV postitive by a lot (said Nuero lol), Betaerson, Gilenya, Tecifidera, Aubagio now on Ocerevus


      stages of mourning

      You are in mourning ... there's several stages to go through and the first is denial, the 2nd is anger..darn right someone should have told you!!

      Next is bargaining, then depression and finally acceptance.

      I am so sorry for you loss and I hope you skip through the rest and they finally get a good cure...there's been such advancement in the many years I've had this.

      I wish you the best Maximumlite, wish we could change the past but hope that we will change the future
      Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart


        Thanks Allyson'
        For you kind words and you may have run into there in Sept. I was there on Sept 15 with another member from Ala. She came to Dr Sullivan for a DX and she also got a Secondary, I really did like that he was to the point on things I'll start pulse steroids in 5 weeks and not looking forward to this but I feel like I have no choice and do want to get better, well better for us anyways.

        We did talk about changing meds but he wants at least 6 months on Rebif but would perfeer 9 months to give it a chance, I still have hope and prayer left. I hope you have been feeling better and make sure to let me know how the new meds work out
        Take Care


          There is some divine intervention going on today, i think. like the economy has the "invisible hand", MS has
          "google alerts" on multiple sclerosis.

          today in my inbox was a report written Medpage today

          "Mixed Results Seen For Immediate MS Treatment"

          Action Points:

          Explain that MS patients who had immediate treatment of Clinically Isolated Disease had fewer relapses but no improvement in disability outcome.

          Note patients who were assigned to immediate treatment were more likely to have no relapses where as patients assigned to delay treatment were more likely to have 3 or more relapses..

          and with this i would like to also bring up the past post of MS meds being overpriced for the quality of life improvement that they provide.

          Originally posted by 0485c10 View Post
          the articles state that the study show QOL improvement cost for MS meds is much more than the cost of maintaining QOL for other chronic disease.

          that AAN report says that
          those taking Avonnex gained 2 quality adjusted months over 10 years compared those that didn't.
          those taking betaseron had 6 out out 10 years relapse free compared to those not taking meds that had 5 out of 10 years without a relapse.

          it also points out the issue we struggle with....for some it helps much more and some much less & we don't know which one we will be within in these averages

          Originally posted by maximumlite View Post
          This was quite the blow today and what peevs me is that my neuro said if one of the other neuros would have given me a proper DX and started me on a DMD that my outcome might have been different.
          In a court of law "what -ifs" don't count. it might have been better, it might have been worse if you started treatment right away. you may have had anaphalctic shock reaction to the med cutting off your breathing...if the other side is different yes it might have been different.

          i had a long time between being told i might have ms & i did have ms. i worried about that in an appointment with 1st doc who told me..."its impossible to diagnose the past in the present. what happened in the past might have been MS or it might have been whatever you thought it was at the time"

          still worrying about it my 2nd doc told me "she doesn't treat the past, she doesn't treat the future, she treats the present"

          perhaps you can understand why i was so interested in the article i saw today, that starting treatment early doesn't change the disability outcome, just the # of relapse(which i lived through ok)

          BTW--I'm in the process of "re-balancing my retirement funds". MS is not the only thing with uncertainty.!