No announcement yet.

Back again

  • Filter
  • Time
  • Show
Clear All
new posts

    Back again

    I was diagnosed with MS in the summer of 2009 at the tender young age of 34. I started my journey with Avonex and, after a year and a half of misery and no positive progress, I switched doctors (moved to a MS specialist) and medications (Gilenya). I started a weight loss journey (lost about 60 lbs) and I had been doing great. Took up running as a hobby and I din't know I had any condition at all most days if I didn't have to take a pill every day. Flash forward to now...I've gained back all of the wight I lost and all of the physical symptoms of MS have returned. I confess that it's just so damn frustrating. I know it feels like to feel good. I was right there for several years. Now I remember what it feels like to be weary to the bone and unable to go to sleep. I have an amazing support system at home but there's no way to explain this (expletive deleted) disease to someone who doesn't have it and can't truly understand. Sometimes I just want to scream. Rant over.

    Hi Bandito!

    Looks like you've been dealing with a bunch of stuff. Hopefully it helps some to share your experiences here with us.

    Originally posted by Bandito1275 View Post
    I have an amazing support system at home but there's no way to explain this (expletive deleted) disease to someone who doesn't have it and can't truly understand.
    This is true!

    Originally posted by Bandito1275 View Post
    Sometimes I just want to scream. Rant over.
    Please feel free to scream or rant here on the message boards (no expletives/profanity, though ) as often as you need to, Bandito.

    We can all try to understand and help each other get through some of the crummy times.

    PPMS for 23 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~


      Rant all you want, Bandito1275! This is a safe place to scream, rant, cry... We all get it!

      There are many parallels of your story and mine.

      I was also officially dx in 2009, although my first flare up was in 1989 and I was misdiagnosed for years.

      I also started Avonex - there weren't many choices back then and was on it for years. Now we are better educated and know that A didn't have a good efficacy rate, so nerve damage was done and now I live with the price it paid.

      But, I too, was able to have many good years with little disability and put MS completely in the back of my mind.

      And like you, now I have many moments and days when I'm so frustrated, sad and angry as my MS has progressed. Thankfully, I have a wonderful support system of family and friends who help me get through. Yes, they help, but no, they don't really understand. No one does until they walk in our shoes.

      I got some printed material through the NMSS (now it's probably online; pdf files) for others to read and it helped educate them. Maybe having them read the material might shed some light on what you're going through.

      In the meantime, take good care of yourself and continue to share with us your concerns. We're glad you reached out to us!
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator


        Welcome Bandito. Your story also parallels mine in some ways but we differ in other ways.

        I was diagnosed a little earlier (2002 onset, 2003 dx) at the age of 39. i didn't have the good years that you talked about. Earlier, when my physical disabilities were fewer, I had frequent and severe flares for which I was usually hospitalized. And, I've never been a runner.

        The parallels include switching to an MS Specialist (in 2008) who switched meds (in my case, from Betaseron to Copaxone). The switch reduced the fx, and, fairly soon, the severity, of my flares. Another parallel is the loss of 60 pounds. That occured in 2010-2011. Although I haven't gained it all back, I do have 15 pounds that has crept on that I can't get off again.

        I'm more active, now, in terms of intentional exercise, than I've ever been, but at a very modified level, compared to others in the community. At age 59, I exercise at Silver Sneakers and the Senior Center with people 10 or 20 or 30 years older than myself.

        I hope that you can get some of the weight off again. If you recall some of your previous successful strategies and try to re-create them, maybe they will work again. For me, it was helpful to have an accountability partner. Maybe we can be that for you. Consider posting in The Wellness Forum in our weekly Exercise Check-In Group.
        This week's:
        An older one:

        Some of our more recent posts are missing, due to a technical problem.

        We also used to have a weekly Weight Loss thread. After our weight loss leader quit posting, it was no longer used regularly, so we stopped posting it. Currently, some of the old ones are archived; I think others might have been deleted. But, if you're interested, I'd be glad to start it up again. Posting there might motivate me to begin losing my extra "15".

        I'm sorry, also, about your physical symptoms returning. That's discouraging.
        ~ 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.