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    10 year MS anniversary is today :-( or:0)

    On Sept. 29, 2004, my GP told me my MRI results were ‘indicative’ of MS. I was 23 and essentially said, "What the hell is MS? Is it fatal? And WHY me?!" It was a really, really terrible day.

    I had been out of college a year, making plans to go to grad school, and planning for my future. I can’t even explain how scared I was as I'm sure many people here understand! I figured I had two choices, move on with my life or sit and feel sorry for myself. I moved on and did my best.

    I have been incredibly fortunate that in 10 years I have gotten married, had two wonderful children, started and completed my PhD, and moved out of state…twice, and I’m in the best shape I have ever been!

    Don't get me wrong; every morning is a struggle to make it a good day. Some days I fail miserably but most days I succeed. What choice do I have? I refuse to settle for a life that is mediocre!

    Over these past 10 years I've been through a lot of crappy stuff as I'm sure everyone can identify with. I've been hospitalized; I've been poked for an IV so many times I stopped counting (I mean how many veins do we have to blow before we let someone else try!); I've experienced a lot of the side effects from the 4 different MS meds I've been on and who doesn't love the steroids and the associated insomnia! I also realize that there are worse things that I haven't experienced. I'm not sure if or when it will be my turn, but I won't let it ruin today.

    Despite all of this, I've come a long way in 10 years. I am so very thankful that my MS does well with the dmds and that I've always had insurance. Back in 2004 I was afraid of what my life would be like in 2014. I don't know what the next 10, 20, 30, 40, 50 years have in store for me, but I'll just continue to take it a day at a time and do my best because that's all I can do!
    Lori
    Betaseron 2004-2009, Tysabri 2010-2011, Copaxone 2012-2013, Tecfidera 2013...

    #2
    Good for you Lori! I also have had MS for 10 years, but they think it has been around 14-15. I am always shocked when people remember their diagnosis date. I have no idea when my diagnosis day was. I know it was sometime in January 2004. But, you know what? I can't remember yesterday so could just be me.

    hoping your MS goes along at the same pace and things go well for you!

    Take Care
    Lisa
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    Comment


      #3
      Happy anniversary! Or something. Ha!

      But seriously, so glad it's been such a fantastic 10 years. Here's to another 100
      Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.

      Comment


        #4
        Also ten years. Unlike you, I knew all too well what MS was. My mother had it...BAD!. I know it was Fall of 2004 but I don't know the exact date, BTW.

        As Elton John sung, "I'm still standing". That is about all I can think of to say!
        Tawanda
        ___________________________________________
        Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

        Comment


          #5
          Thanks!! I only know my anniversary because when I was first diagnosed I kept a journal of all the symptoms and such. It actually was in 2003 so it's been 11 years.

          Here's hoping my symptoms stay mild and Tecfidera keeps the exacerbations away!
          Lori
          Betaseron 2004-2009, Tysabri 2010-2011, Copaxone 2012-2013, Tecfidera 2013...

          Comment


            #6
            Originally posted by lorib View Post
            Thanks!! I only know my anniversary because when I was first diagnosed I kept a journal of all the symptoms and such. It actually was in 2003 so it's been 11 years.

            Here's hoping my symptoms stay mild and Tecfidera keeps the exacerbations away!
            Hi Lori,
            How is the Tec going? I am curious how many DMTs you have tried over 10 years. I have done Avonex and Tec, but Tec has side effects for me including a weird nose drip and hair loss . Hope it is going better for you.
            Tawanda
            ___________________________________________
            Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

            Comment


              #7
              Originally posted by Tawanda View Post
              How is the Tec going? I am curious how many DMTs you have tried over 10 years. I have done Avonex and Tec, but Tec has side effects for me including a weird nose drip and hair loss . Hope it is going better for you.
              Hi Tawanda!

              I have been on a handful of the MS drugs! The only one that definitely didn't work for me was Betaseron. I built up antibodies to Betaseron so that one was no longer effective and led to my last relapse.

              Tysabri was fine for me, but I was on it a year and my neuro tested me and I was JCV+, plus I wanted to have another baby.

              So I switched to Copaxone. That one was fine but I had injection reactions on my legs and stomach. Plus, who likes daily injections so I asked about the new oral drugs.

              I decided on Tecfidera and my neuro thought that was a good idea. For about the first 3-6 months I felt really nauseous if I took the medication without eating a meal or large snack after I took it. I might have had other common symptoms but they weren't to bad. Also, I did do all the standard stuff you'll find on the Tec board on this site like take a low dose aspirin, don't take Tec on an empty stomach, and whatever else it suggests to minimize side effects.

              I'd been on Tec a year in May and all the side effects are gone. My MS is the same, but all my symptoms were invisible anyway. Also, the last MRI didn't show any active lesions so that's good.

              I'm sorry you're having some side effects from Tec! How long have you been on it? Have you tried taking something like Sudafed or a decongestant for the nasal drip?
              Lori
              Betaseron 2004-2009, Tysabri 2010-2011, Copaxone 2012-2013, Tecfidera 2013...

              Comment


                #8
                Originally posted by lorib View Post
                Hi Tawanda!

                I have been on a handful of the MS drugs! The only one that definitely didn't work for me was Betaseron. I built up antibodies to Betaseron so that one was no longer effective and led to my last relapse.

                Tysabri was fine for me, but I was on it a year and my neuro tested me and I was JCV+, plus I wanted to have another baby.

                So I switched to Copaxone. That one was fine but I had injection reactions on my legs and stomach. Plus, who likes daily injections so I asked about the new oral drugs.

                I decided on Tecfidera and my neuro thought that was a good idea. For about the first 3-6 months I felt really nauseous if I took the medication without eating a meal or large snack after I took it. I might have had other common symptoms but they weren't to bad. Also, I did do all the standard stuff you'll find on the Tec board on this site like take a low dose aspirin, don't take Tec on an empty stomach, and whatever else it suggests to minimize side effects.

                I'd been on Tec a year in May and all the side effects are gone. My MS is the same, but all my symptoms were invisible anyway. Also, the last MRI didn't show any active lesions so that's good.

                I'm sorry you're having some side effects from Tec! How long have you been on it? Have you tried taking something like Sudafed or a decongestant for the nasal drip?
                Thanks for replying. I put aside the Tec for a long time but never arranged to get on anything else. I started feeling like MS was eating me up more than anything else could, so I got the Tec out...one pill a day again. It was already here. I have tried allergy meds...not really helpful, but more than the runny nose, the hair loss bothers me.
                Tawanda
                ___________________________________________
                Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                Comment


                  #9
                  Have you talked with a nurse with Biogen or MSActive Source? I'm sure other people have reported hair loss also. Have you tried any of the other oral medications? If the side effects of Tec are too bad and they don't go away after a few month I'd definitely try something else. Best of luck!
                  Lori
                  Betaseron 2004-2009, Tysabri 2010-2011, Copaxone 2012-2013, Tecfidera 2013...

                  Comment


                    #10
                    how much of your "victory' do you attribute to...

                    Attitude? I fear my lack physical activity may be more self-pity.

                    Any suggestions on how to meet up with a support group? I sit at home AlllllDaaaaaayLong

                    I fatigue easily and don't know it this means 'push through' and build my stamina or 'stop and cool down'?

                    I'm still completely ambultory and have lost no motor function. My vision is going downhill pretty quick though so please forgive me if my questions are redundant/answered somewhere else...your the first person I've connected/reached out to.

                    I was diagnosed after MRI, post semi-truck accident, Sept 2012 and my 2nd and 3rd MRI showed 'MORE' LESIONS

                    Comment


                      #11
                      Hi Jennette!

                      Originally posted by JennetteD View Post
                      How much of your 'victory' do you attribute to Attitude? I fear my lack physical activity may be more self-pity.
                      For me, it's mostly due to attitude. My MS symptoms only limit me if I let them, or if I use them as an excuse.

                      When I was diagnosed, I was 23. I had just graduated from college so I had my whole life before me. I had some weird stuff going on and found out I had MS. The only thing I knew was that MS wasn’t fatal, but it would make my life harder.

                      The way I have always seen it is I can either give up or I can keep doing my best. I now have 2 kids and a husband. I know they don’t deserve to watch me give up so I do my best.

                      Have you called your local MS chapter to find out about local MS support groups? They should have a lot of resources and groups for you to connect with. This site is a great one for asking questions and meeting other MSers who have gone through some of the stuff that you are dealing with.

                      I think my fatigue is different. I don’t really get tired from doing something, I’m just tired before I even start. My muscles and stuff always work fine. I’m just not usually motivated to do anything. So, this is why I think attitude matters so much, at least for me! I take 10 mg of adderall twice a day and that really helps.

                      Originally posted by JennetteD View Post
                      I fatigue easily and don't know it this means 'push through' and build my stamina or 'stop and cool down'?
                      When I say to ‘push’ through I’m usually referring to getting something done despite the fact that I may be 'too tired'. By too tired I mean like I am unmotivated and would rather sit on the couch and read or watch TV.

                      If you're referring to 'pushing through' while I'm exercising. I sometimes have to push or talk myself into exercising, but it's always worth it once I'm done.

                      A lot of people spend their time being inactive rather than active MS or not! If you get tired easily but want to be more active I recommend taking it slow. Do a 5 minute walk, then 10 minutes, then 15. Gradually increasing your time and speed will strengthen your muscles and your body so you can do more before you get tired. Our bodies are amazing!

                      When I mention stopping and cooling down while exercising it means that the left side of my body is getting hard to control. This is 100% MS because when it's active I have semi paralysis of my left arm and to a lesser extent my left leg. So when I'm moving too fast or breathing too hard I know that I need to get a quick drink of water and work on bringing down my heart rate.

                      Never worry about asking questions on this site! That's why we're here!! I hope I answered some of your questions and I hope you remain ambulatory because that's one of the things I'm most afraid of!

                      Take care!
                      Lori
                      Betaseron 2004-2009, Tysabri 2010-2011, Copaxone 2012-2013, Tecfidera 2013...

                      Comment


                        #12
                        Thank you for sharing your progress/journey. It’s an inspirational store no doubt. Please keep plugging away and don’t stop. I know I don’t know you but none the less am very proud of you 😊


                        Originally posted by lorib View Post
                        On Sept. 29, 2004, my GP told me my MRI results were ‘indicative’ of MS. I was 23 and essentially said, "What the hell is MS? Is it fatal? And WHY me?!" It was a really, really terrible day.

                        I had been out of college a year, making plans to go to grad school, and planning for my future. I can’t even explain how scared I was as I'm sure many people here understand! I figured I had two choices, move on with my life or sit and feel sorry for myself. I moved on and did my best.

                        I have been incredibly fortunate that in 10 years I have gotten married, had two wonderful children, started and completed my PhD, and moved out of state…twice, and I’m in the best shape I have ever been!

                        Don't get me wrong; every morning is a struggle to make it a good day. Some days I fail miserably but most days I succeed. What choice do I have? I refuse to settle for a life that is mediocre!

                        Over these past 10 years I've been through a lot of crappy stuff as I'm sure everyone can identify with. I've been hospitalized; I've been poked for an IV so many times I stopped counting (I mean how many veins do we have to blow before we let someone else try!); I've experienced a lot of the side effects from the 4 different MS meds I've been on and who doesn't love the steroids and the associated insomnia! I also realize that there are worse things that I haven't experienced. I'm not sure if or when it will be my turn, but I won't let it ruin today.

                        Despite all of this, I've come a long way in 10 years. I am so very thankful that my MS does well with the dmds and that I've always had insurance. Back in 2004 I was afraid of what my life would be like in 2014. I don't know what the next 10, 20, 30, 40, 50 years have in store for me, but I'll just continue to take it a day at a time and do my best because that's all I can do!

                        Comment


                          #13
                          Thank you Lori

                          Your input and suggestions are amazing and generous. It really helps so much to know others care so much.

                          How do I go about finding out about my ‘local chapter’?

                          Originally posted by lorib View Post
                          Hi Jennette!



                          For me, it's mostly due to attitude. My MS symptoms only limit me if I let them, or if I use them as an excuse.

                          When I was diagnosed, I was 23. I had just graduated from college so I had my whole life before me. I had some weird stuff going on and found out I had MS. The only thing I knew was that MS wasn’t fatal, but it would make my life harder.

                          The way I have always seen it is I can either give up or I can keep doing my best. I now have 2 kids and a husband. I know they don’t deserve to watch me give up so I do my best.

                          Have you called your local MS chapter to find out about local MS support groups? They should have a lot of resources and groups for you to connect with. This site is a great one for asking questions and meeting other MSers who have gone through some of the stuff that you are dealing with.

                          I think my fatigue is different. I don’t really get tired from doing something, I’m just tired before I even start. My muscles and stuff always work fine. I’m just not usually motivated to do anything. So, this is why I think attitude matters so much, at least for me! I take 10 mg of adderall twice a day and that really helps.



                          When I say to ‘push’ through I’m usually referring to getting something done despite the fact that I may be 'too tired'. By too tired I mean like I am unmotivated and would rather sit on the couch and read or watch TV.

                          If you're referring to 'pushing through' while I'm exercising. I sometimes have to push or talk myself into exercising, but it's always worth it once I'm done.

                          A lot of people spend their time being inactive rather than active MS or not! If you get tired easily but want to be more active I recommend taking it slow. Do a 5 minute walk, then 10 minutes, then 15. Gradually increasing your time and speed will strengthen your muscles and your body so you can do more before you get tired. Our bodies are amazing!

                          When I mention stopping and cooling down while exercising it means that the left side of my body is getting hard to control. This is 100% MS because when it's active I have semi paralysis of my left arm and to a lesser extent my left leg. So when I'm moving too fast or breathing too hard I know that I need to get a quick drink of water and work on bringing down my heart rate.

                          Never worry about asking questions on this site! That's why we're here!! I hope I answered some of your questions and I hope you remain ambulatory because that's one of the things I'm most afraid of!

                          Take care!

                          Comment


                            #14
                            Originally posted by JennetteD View Post
                            How do I go about finding out about my ‘local chapter’?
                            If you visit the NMSS website (https://www.nationalmssociety.org/) look for something that says "IN YOUR AREA" near the top of the page. When you click on that it will link you to a page where you can enter your zip code and it should take you to a page where you can check out links for events or opportunities near you that you may be interested in. I hope you're doing well and sorry for the late response.
                            Lori
                            Betaseron 2004-2009, Tysabri 2010-2011, Copaxone 2012-2013, Tecfidera 2013...

                            Comment


                              #15
                              :-( or :0)

                              Yeah. Hard to choose some days. Life with MS can be tough, but, on the other hand, sometimes it just is what we choose to make it. We can remain a glass half full kind of person and find life's blessings along the way, or we can turn into a glass half empty person and bemoan our situation.

                              It's uplifting to read that, in sptie of crappy stuff, you are able to be thankful for what's gone well and you are able to continue to look on the bright side. :-)
                              ~ 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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