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    Reintroduction

    Hello I am 40 years old and was diagnosed with MS when I was 26. I started Rebif a few months after my diagnosis.

    When I was first diagnosed my neurologist told us to find out what we could about the C.R.A.B drugs and he would see me in a month and we would decide which one I would do. Tysabri had come out but was more of a second line at that time. It had come out, been recalled, and brought back out under the Touch program.

    I did the Rebif for five years. Then when we went to my neurologist appointment after a recent MRI he said the Rebif was not working anymore so we would have to make a decision about another treatment.

    So now my neurologist was not being proactive enough to make my stepmother happy because I was steadily declining. I was not declining as bad as she said, but I was declining.

    So she decided we needed a new neurologist and tried to make an appointment for me at the Shepherd Center. They would not let her make my appointment since I was old enough nto make my own decisions.

    So I started the process of getting an appointment at the Shepherd Center. I called and tried to get an appointment with one specific Dr. I was told I would have to wait four months so I said okay.

    After I waited four months for my appointment they called the week before to confirm my appointment with a different Dr, when I questioned this they said well if you want to see him you're going to have to wait a few months.

    So since I had already taken off work for the appointment I went ahead and went to the app.

    When we went up there we got a motel room for the night before the appointment since it was a five hour drive.

    We went and saw the Dr I didn't want and I started Tysabri.

    So I have been on Tysabri since December of 2012. I didn't like the fact that the Dr made me go to the Shepherd Center every month for the Tysabri.

    I eventually met a neurologist closer at some MS support group meetings and mentioned how that Dr would not let me do the Tysabri anywhere except for Shepherd Center. He agreed that that drive was too much every four weeks. I set up an appointment as fast as I could but I had to get my PCP to refer me.

    So I started seeing that Dr and there is an infusion center closer to my home than his office.

    I keep doing the Tysabri. I was also diagnosed with sleep apnea along the way.

    Then I started falling asleep at my desk at work. I was given chances to try and figure out why it was happening.

    My original neurologist who I still saw some was willing to put me out on long term disability, but I listened to my wife and we deci maybe if instead of two fifteen minutes breaks I would do better with three ten minute breaks.

    Eventually it happened again and I was terminated from my job(career.)

    So now I am married with two children and no job and no prospects.

    I eventually found something but didn't like it because it was an hour and a half each way. I did that for a few months and tried to make it as an Aflac agent. That didn't work out. So I later found a position as a service advisor for a Dodge dealership about 30 miles away. Right when my benefits were going to kick in the chain I was with sold that dealership to another chain. So they came in and said no one was going to lose their job. So the last day at the old dealership chain I was at I was at I was not at work because of my Tysabri infusion. When I came back the next day to go to work I was greeted by a new computer system. I was shown about a quarter of what I was shown with the previous system which I only got about half of what I needed to know.

    Which I have tried to get on Social Security disability in the process, but have not gotten it yet. I actually had a hearing for it last year, but I had found a job where he two requirements were have a pulse and type 30 WPM. I quit that job before being fired for not convinci enough idiots who had bought timeshares to renew, upgrade, deposit their weeks into so the company could rent them to others.

    So I was not given my Social Security and we are in the process of try

    #2
    So sorry but my phone posted this before I was done.

    So I was diagnosed 14 years ago and have gone from a young ilIT analyst with a major baking company to a man that has had more jobs in the last four years than I did in the first 36 years of my life. My wife wants me to get my disability, my parents want me to get my disability, I personally would rather work. I feel like something is not right if I am stuck at home all the time.

    Well I forgot where I left off earlier and that is all I can think of right now.

    Comment


      #3
      Welcome back, Luke. Thanks for the reintroduction. It looks like you've been a member here for awhile, but just started posting again the last couple of months. I appreciate knowing your history.

      ((Sigh)). Yeah, disability. Tough subject. Ya know, most of us who go on disability don't want to take that step. Sometimes the stereotype that the public might hold about us is that we're just a bunch of slackers who don't want to work. But, in my experience, that's seldom the case. You said that your wife and your parents want you to go on disability. What are their reasons for those feelings? Do they see some challenges for you that indicate maybe it's time?

      Here's my story.
      I'm 58 now. My MS started in 2002, with a bang. After multiple ER visits and hospitalizations following a stroke-like incident which was actually my first MS flare, I had to take 8 months off (two more flares, with very different symptoms, during those months). I lost my job.

      Like you, I wanted to get back to work. I opened a licensed day care home which I did for about a year and a half. Another major flare, another job loss, another 8 months off of work.

      Hubby wanted me, both times, to get on disability. But, after I recovered, I got another job, this time as a para in a school district. I worked there for 4 years. I struggled, too, with staying awake on the job, but it was in the afternoons during down time when I was working alone and others likely didn't notice the catnups I took because they weren't around to view it. And, every year, I had one or two flares and multiple times off of work and had to use FMLA leave 3 years in a row. When, the fourth year, I applied for FMLA again, I lost this job.

      It was at this point (in 2008), that I realized that, maybe, I wasn't very employable anymore. I applied for SSDI disability.. I worked hard at my application, adding all the details that I believed would help my case. Three doctors (PCP, psychologist, neurologist) recommended that I needed to go on disability. I was approved quickly, due probably to my 3 job losses which indicated my desire to stay working, my doctors' recommendations, and many many medical records. After my approval, I was also still eligible to apply for LTD (long term disability) from my job which I also received. Soon, it will convert to a retirement benefit for me.

      I grieved giving up my career. But, I truly believe that it was time. Falling asleep at work makes it sound like it might be time for you.

      A disability income allows you the freedom to choose what you want to do with your time. You could even work part time, if you take care to keep your income below the required level. For, many years, I did a significant amount of volunteering in the community (5-15 hours a week). I was able to start exercising and getting enough rest and taking care of myself better.

      It might be time for you to move on. If not, I wish you the best in keeping your job. But I encourage you to consider your options, talk to your family and weigh the pros and cons.

      Wishing you the best.
      ~ 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
        Hello lukeduke

        Thank you for sharing your experience with us.

        Good luck with SSDI, or with finding a job that is doable, and that you enjoy.

        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


          #5
          Thank you for sharing your journey with us. Each story is unique and yet many similarities. We’re all doing our best to make the most of our circumstances. And yes, going on SSDI is liberating.

          Paula

          Comment

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