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    FOR THE FIRST TIME......

    since I have been diagnosed I am scared. Though I have only been diagnosed for 31/2 years it took 10 years to finally arrive there. In that time I had the usual symptoms and while they were being treated the MS itself wasn't. I often wondered what damage occurred in that 10 years. While I may never know I know what damage has been caused now.

    For the last 4 days I have been using two canes to walk around. The spasticity in my legs is off the charts. I was explaining it to my Neuro today and he seemed to be astonished. He witnessed for the first time my inability to think of words at the proper moment. thank goodness my DW was with me to finish my thoughts. She has become real good with it.

    It was after this visit that I became scared. It took me back to the day I was diagnosed and my son called to ask me how I was doing. I told him I was fine but was scared of the thought that I may one day end up in a wheelchair. I ear that day is approaching faster than either I or my Neuro expected.

    We both knew my MS was progressing but he seemed to think that it is progressing at a more rapid rate than he first thought. He came to that conclusion after my exam and after reviewing my latest MRI with the Radiologist.

    I don't have a question I just needed to say I'm scared. I know that may sound corny but it is hard to admit some time. It's real hard for me. I knew everyone here would understand so I came here. I sure some of you have been there. I'm scared and I'll deal with it. I'll deal with whatever MS has in store for me. Life goes on, but it's ok to be scared.

    Thanks for letting me ramble.
    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

    It's hard to beat a person that never gives up.
    Babe Ruth

    #2
    Hi Waydwnsouth1,

    I don't have a question I just needed to say I'm scared. I know that may sound corny but it is hard to admit some time.
    It doesn't sound corny.

    I would be surprised if anyone said they were not scared of this disease at one time or another.

    I will admit freely this disease scares the crap out of me. Some of the exacerbations I have had scared the crap out of me as I didn't know how I could live the rest of my life in the condition the exacerbations put me in.

    The feelings of fear this disease can cause can be overwhelming and one reason I usually will not go down the path of what ifs. Although through the years I have always taken into consideration what limitations I have or might have as we build or remodel our home.

    Blessings, Waydwnsouth1
    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


      #3
      Me too. I have been terrified the entire 10 years since my diagnosis. I truly believe its not a matter of if but rather when MS will steal my independence.

      I work as much as I can to prepare both emotionally and financially for what I believe is the inevitable.
      He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
      Anonymous

      Comment


        #4
        i am usually more scared than not. it may not show aand i try to keep up a confident look for others. i recently participated in a study about fatigue and one of the questions was about your confidence level. mine was never lower than a 6 on a 0-10 scale with 10 being the worst.
        hunterd/HuntOP/Dave
        volunteer
        MS World
        hunterd@msworld.org
        PPMS DX 2001

        "ADAPT AND OVERCOME" - MY COUSIN

        Comment


          #5
          I think it is normal to be scared. I am very nervous about the future. I am active duty military and my career is coming to an end because of MS. I don't know what I'm going to do for an income. I know I can't go back to being a mechanic like I was. I've become very heat sensitive. I'm really hoping for 100% VA disability to help me out. The sad part is I feel guilty about it. I'm only 41, I should be able to work.

          What scares me the most though is my kids. They're. 7 and 9. I want to be there for them and be healthy enough to do things with them. I see them worrying about me and it just kills me. No kid should have to worry about their dad.

          The military tells me it will take 6-9 months to complete the medical process. Thank goodness I can probably pay off every bill we have in that time. My focus in life has changed from my career to my kids. That is the one good thing about this. It has made me realize what is truly important.

          John
          Diagnosed RRMS April 2014
          Trying to be the best dad I can!

          Comment


            #6
            WDS-If your symptoms are aggressive, you might want to consider a more aggressive DMD. And it's O.K. To be scared.

            Reformed Yankee- I'm retired military. You should also be getting a Military Retirement vs. a Separation too, no? And Tricare...which you will find is the best benefit out there. Additionally, your MS will rate out Service-Connected.
            Katie
            "Yep, I have MS, and it does have Me!"
            "My MS is a Journey for One."
            Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

            Comment


              #7
              Katie,

              I don't have enough active years to qualify for retirement. It is my understanding that I will have the va disability rating completed through the IDES process. I am extremely thankful for Tricare. That is truly a huge benefit.
              Diagnosed RRMS April 2014
              Trying to be the best dad I can!

              Comment


                #8
                Fear of the future is always there. It hovers above me, just to the left. And it's not going away. If I think about it too much, it will envelop me. So I try to keep it "up there".

                I know in the future I will be worse than I am today because I'm worse today than I was just last year. But I'm doing pretty good right now.

                Comment


                  #9
                  Katie,
                  We, my Neuro, myself and my wife are working on another DMD as we speak. We were going to switch to TY but I tested JC positive. So now we are pursuing Gilenya. I am also looking into the new DMD Plegridy. As far as I know those are the only two option I have left without getting into the chemo type drugs. I have been on everything else and nothing has worked.

                  BTW I am still pursuing my VA options. Just waiting for my records from my Neuro which I will pick up when I see him again in two weeks.
                  Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

                  It's hard to beat a person that never gives up.
                  Babe Ruth

                  Comment


                    #10
                    retirement

                    Reformed Yankee, If you are active duty now, and going through the Medical Evaluation Board process, you can ask for a Chapter 61 medical retirement regardless of years of service. I was medically retired after only 6 years, there is no length of service requirement.

                    Now, because of concurrent receipt laws you will only get your VA disability pay and not a retirement check; however, you will keep PX and Commissary priviledges and be eligible for care on base as well as Tricare Prime for you and your family. There is no better insurance out there.

                    Comment


                      #11
                      Intel Soldier,

                      Thanks. I'll have to do that. I've been making monthly trips to the commissary. It definitely helps, but the insurance is huge. Thanks again.

                      John
                      Diagnosed RRMS April 2014
                      Trying to be the best dad I can!

                      Comment


                        #12
                        I would love to be able to get Tricare unfortunately those days way past me now. Good Luck to you Reformed Yankee!!
                        Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

                        It's hard to beat a person that never gives up.
                        Babe Ruth

                        Comment


                          #13
                          Originally posted by Waydwnsouth1 View Post
                          So now we are pursuing Gilenya. I am also looking into the new DMD Plegridy. As far as I know those are the only two option I have left without getting into the chemo type drugs. I have been on everything else and nothing has worked.
                          . You mentioned Plegridy, I might be mistaken, but I believe Plegridy is another interferon, just dosed further apart. From your med history it looks like you've been down the interferon path before.

                          As far as fear of the disease, I totally agree with what Snoopy said, there are probably very few MSers who haven't feared the disease at some point in their MS journey.

                          Just the unpredictability of what body part is going to work or not work on any given day is enough to unnerve me. I think we'd be abnormal not to be freaked out sometimes.

                          Comment


                            #14
                            Thank you for your service to our country, to us

                            Thank you so very much. I am so very sorry you are dealing with this MS stuff.

                            I am so very glad that at least you are receiving good medical care.

                            Comment


                              #15
                              Originally posted by IntelSoldier View Post
                              Reformed Yankee, If you are active duty now, and going through the Medical Evaluation Board process, you can ask for a Chapter 61 medical retirement regardless of years of service. I was medically retired after only 6 years, there is no length of service requirement.

                              Now, because of concurrent receipt laws you will only get your VA disability pay and not a retirement check; however, you will keep PX and Commissary priviledges and be eligible for care on base as well as Tricare Prime for you and your family. There is no better insurance out there.
                              Intel Soldier - No longer true since about 2005 or so. Retired Active Duty Persoonel get concurrent receipt. I get both my Military Retirement and VA Disability. Retirees are all being switched to Tricare Standard. But I agree...Tricare is awesome.

                              WDS-Glad you are on top of looking at your medication options.

                              Reformed Yankee- If you don't mind me asking how many years of AD do you have and which Branch. I'm a retired AF Personnel Officer.
                              Katie
                              "Yep, I have MS, and it does have Me!"
                              "My MS is a Journey for One."
                              Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                              Comment

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