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    RRMS since 2009

    My name is Josh and I've had MS since October 2009. From what other people are dealing with it sounds like I don't have it too bad. But I'm definitely tired of dealing with it. I just finished my dose of Lemtrada that my neurologist prescribed. So far so good now I'm just dealing with the post medication aftermath. Having to flush my system about a gallon of water a day so I don't have cytokine release syndrome. I started my Ms by being on avonex back in 09 for about 6 years, then tried tecfidera that did not work well at all as far as side effects. Next was plegridy which seem to do okay but I got tired of all the shots and being a pincushion. After that was Aubagio which I thought was going to be good but ended up not working at all for me which is why I had this last major flare-up which led to Lemtrada.

    Hopefully this will be the last night I ever take and my body will go back to somewhat normal. The One symptom I'm still currently dealing with but I'm hoping we'll go away or correct itself is overactive bladder issues with frequency and urgency. I can't spend the rest of my life being 20 minutes away from the bathroom if I drink something while trying to live daily life. Anyways that's me in a nutshell.

    #2
    Originally posted by Bimmerguy82 View Post
    My name is Josh and I've had MS since October 2009. From what other people are dealing with it sounds like I don't have it too bad. But I'm definitely tired of dealing with it. I just finished my dose of Lemtrada that my neurologist prescribed. So far so good now I'm just dealing with the post medication aftermath. Having to flush my system about a gallon of water a day so I don't have cytokine release syndrome. I started my Ms by being on avonex back in 09 for about 6 years, then tried tecfidera that did not work well at all as far as side effects. Next was plegridy which seem to do okay but I got tired of all the shots and being a pincushion. After that was Aubagio which I thought was going to be good but ended up not working at all for me which is why I had this last major flare-up which led to Lemtrada.

    Hopefully this will be the last night I ever take and my body will go back to somewhat normal. The One symptom I'm still currently dealing with but I'm hoping we'll go away or correct itself is overactive bladder issues with frequency and urgency. I can't spend the rest of my life being 20 minutes away from the bathroom if I drink something while trying to live daily life. Anyways that's me in a nutshell.
    Hi Josh Welcome!

    Thanks for sharing your story with us.

    Good luck with your Lemtrada treatment! I have read some positive articles recently about Lemtrada and improvements.

    It would be great if your overactive bladder issues get better. You never know!

    Hope you find MSWorld to be interesting and helpful. Looking forward to more posts from you.

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Welcome, Josh. I hope Lemtrada is a good med for you.

      Originally posted by Bimmerguy82 View Post
      ... The One symptom I'm still currently dealing with but I'm hoping we'll go away or correct itself is overactive bladder issues with frequency and urgency. I can't spend the rest of my life being 20 minutes away from the bathroom if I drink something while trying to live daily life. Anyways that's me in a nutshell.
      One thing that works for my overactive bladder, at night, is supplements. A magnesium / calcium supplement is usually enough. When it is not, I also take Uva Ursa. Both of these might be available at your local health food store. Another option is to look for them at amazon.com .

      My MS Specialist says that some patients like to use the med Oxybutynin for overactive bladder. You could ask your doc about that, but I've found the supplements to be more effective for me.
      ~ 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


        #4
        Mamabug, I will check into the magnesium and calcium. I actually already do use oxybutynin which does help a little bit, but I still have frequent urges to go and seems like I can sometimes hold off but sometimes I also have accident or leakage. I'm working on Kegel exercises to help strengthen my bladder and pelvic muscles hoping that will help. I just hate having that feeling of urgency like I have to go and try and hold it and not knowing if it's going to work or not or if I'm going to have an accident. 🙄

        Comment


          #5
          Bimmer -- I hope the mag Cal works for you.
          Instead of getting up every two hours at night, I can now wait 4-5 hours.

          Also, avoid drinking caffeine or eating foods that are diuretic.
          Last edited by Mamabug; 06-15-2018, 11:01 AM. Reason: Corrected spelling mistakes
          ~ 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

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