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How long were you able to work after diagnosis?

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    How long were you able to work after diagnosis?

    I was diagnosed almost 2 yrs ago at the age of 37 and immediately started taking Copaxone.

    I was wondering how long you can work after diagnosis? I work in an office so I do alot computer work and work 6 days a week around 48-50 hours a week. I know if I worked anywhere I had to stand for long periods of time I would have quit by now.

    I am still going strong, I have some brain fog and forgetfulness. By biggest problem is fatigue and cognative issues. I am just wondering how long I can keep working. Financially I am in ruins with alot of debt. I do not have the money to put aside for when I can not work. I am the major breadwinner in the house.

    I am comtemplating filing for bankruptcy so I can start saving for my future. My credit is already shot so it will not be a big deal. I just don't want to have to quit and then if I am approved for disability it won't be enough to pay my mortgage.

    I already feel my MS slowing me down in the 2 short years. I am extremely tired when I get home from work so no house work is getting done. My kids are helpful at some point but I feel guilty asking them to clean the whole house while I sit on the couch and watch tv. they already do alot for me but I don't have the energy to fold and put laundry away and they do the laundry.

    I am just sick of my house being a mess and I would like to at least cut down on my hours to only 5 days a week 40 hours but that would hurt financially.

    I guess I just want to be able to prepare a little for the future, even though I am still in denial that I have MS at all. I just can't accept it, so I just deny it.

    #2
    I have had MS officially for 11 years and am still working. It will soon be time for me to quit but I made it this far. Every one is different though. You will know when you can't do it any more.
    Webbles

    Weebles wobble but they don't fall down (much)

    Comment


      #3
      4 yrs & counting ...

      I was dx 4 yrs ago, but my sx date back almost 13 yrs. Like you I have a desk job & my main sx are cog fog/fatigue. Currently I believe I can do this job for many more years, but we all know that could change tomorrow

      For my fatigue I take the supplements ALA/ALC. Check it out in Tara's forum, do some research on your own. Shashi has lots of good posts on the subject.

      I do know that w/o these anti-oxidants I wouldn't be able to work 40 hrs/wk plus take care of house & family. They aren't miracle pills that give me the energy I had 10 yrs ago, but they help me able to function semi-normal.
      DX 10/2008
      Beta Babe 12/2008-07/2013
      Tecfidera 07/2013-01/2018
      Aubagio 01/18-09/20

      Ocrevus 09/20-present

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        #4
        thank you for taking the time to reply. I feel better knowing that I may continue to work longer than I thought.

        Comment


          #5
          A lot of earlier statistics on employment are based on not having the Rx to slow the disease progression down. It really is an individual thing.

          I've been fortunate, 6+ years diagnosed, but probably at least 19 years with first flare, possibly even 29. I seem to go thru a rough patch now and then, wonder about working how much longer, then things seem to get better.

          The cognitive questions with the fatigue are the toughest. If you haven't, you may want to talk to neuro about a cognitive assessment so you have a baseline. I just took mine again and it shows some change, but nothing major. It at least gives me an objective measure - my perception was a lot worse than what the test showed.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            I have known people that stopped working right away and I also know people that haven't stopped working and will probably work until retirement. Personally I worked for over 20 years after dx. I do know that you will know when you need to stop and hopefully you won't have to.

            Comment


              #7
              Not sure...

              I was just dx recently but have not been able to work since my current flare started. I have many symptoms that have not gotten a single 1% better (despite steroids twice) since the beginning of April and they directly affect my ability to do my job. The doc put me on disability and it is unclear when I might be able to return to work.

              So I don't get to answer the question directly, but I can share that it really just depends on the severity of the flare and the affect of the lasting damage/symptoms. I am sure it will be some time before I know if I will be able to return to work.

              Comment


                #8
                To Pennstater

                I have a psychoneurological exam scheduled for next month. Is that the kind of test you had? I'm really nervous about it, it will preceed my filing for disability due to the cognitive changes (and other issues). Any information you can give will help greatly.

                Thanks,
                dck696 (aka VanderbiltCommodor-er)
                Donna K: dx RRMS 12/07. Rebif 2/08 - 3/09, Tysabri 3/09 - 7/12, ended due to JCV+. Betasaron 8/12 - present
                Filed for SSDI 8/12. Approved 11/12
                dx PPMS 7/13. Added Metotrexate 2.5 mgx3 to Beteseron. Stopped all meds 3/14 to quality for ibudilast clinical trial for PPMS

                Comment


                  #9
                  Originally posted by mchugh725 View Post
                  I guess I just want to be able to prepare a little for the future, even though I am still in denial that I have MS at all. I just can't accept it, so I just deny it.
                  I think this a good rationale and I started planning for the unpredictable future right after my diagnosis. It would be worth considering adjustments you can start now for example cutting back on things that aren't absolute necessities like cable TV, smart phones, start packing lunches, get a room-mate etc. if you aren't already doing those things.

                  I have been fortunate in that I live frugally and was in decent shape financially when I was diagnosed. I have also been blessed to be able to continue working for over 7 years since being diagnosed however I continue to save and plan for the chance that I won't be able to work until retirement age like most people count on.

                  Best of luck to you.
                  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


                    #10
                    Here is a good link with a variety of replies regarding working or not after MS.

                    http://www.msworld.org/forum/showthread.php?t=119908
                    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


                      #11
                      I have had MS since my early 20's I finally had to stop working 3 years ago at age 48. My first few years the flares were sproradic and I was able to work through them. Once I hit my 40's they became more numerous and more severe making it almost impossible to go to work everyday.

                      Comment


                        #12
                        My biggest issue is sitting all day - becoming a bit much. I work a F/T job. My neck/shoulders are bothering me quite a bit. They stay so tight and tensed up and working makes it worst.

                        My right leg also bothers me from sitting a lot. I have been sitting at my home computer for a few hours and I am really feeling it. When I get up, I know I will be walking a bit stiff.

                        I would love to continue working and really cannot afford to quit unless my husband is willing to move to a cheaper place which he is very materialistic so I don't see that happening.

                        However, not sure how much longer I can work with the way I feel.. my neck/shoulders/LEG are AWFUL... and sitting at a desk all day do not help matters at all. I try to get up and take breaks but it does not help. Feels like a place on the right side of my neck is stuck or something..I try to stretch it but it hurts like the dickens... I know its a tension knot but feels like something else going on up there.

                        My regular dr did an xray.. he did not see any type arthritis..I know I did not have any broken bones. I wonder if an MRI will show anything. I wake up with it soooo tight. It makes the right side of my face a bit tight as well.. so tired of this. Also, have sinus issues which is causing face, nose, head pressure....WHAT JOLLY FUN :0(

                        I see my Neuro next week.. will see what he suggest.

                        Ms. Jay

                        Comment


                          #13
                          I worked about 6 months. Dx'd in February in a plant that didn't have air conditioning. The IS department did but I was always having to go out onto the floor that wasn't.
                          techie
                          Another pirated saying:
                          Half of life is if.
                          When today is bad, tomorrow is generally a better day.
                          Dogs Rule!

                          Comment


                            #14
                            Reply to: dck696

                            Donna,

                            Sorry - just saw your question. The neuro psych is nothing to stress over. They do some tests to see how your verbal and visual memory is, some word associations, basic math, ability to analyze and work thru problems.

                            I tried to treat it as if I were working a puzzle book or game show. You want to try to be as relaxed as you can so that anxiety doesn't distort things for you. I was a little nervous, but then you start to focus on the questions they ask and forget all about why you are there.

                            Keep in mind that some good can come out of it. Even if it does identify a problem area, the can potentially recommend some occupational therapy to help.

                            Good luck and let us know how you make out.
                            Kathy
                            DX 01/06, currently on Tysabri

                            Comment


                              #15
                              Originally posted by pennstater View Post
                              Reply to: dck696

                              Donna,

                              Sorry - just saw your question. The neuro psych is nothing to stress over. They do some tests to see how your verbal and visual memory is, some word associations, basic math, ability to analyze and work thru problems.

                              I tried to treat it as if I were working a puzzle book or game show. You want to try to be as relaxed as you can so that anxiety doesn't distort things for you. I was a little nervous, but then you start to focus on the questions they ask and forget all about why you are there.

                              Keep in mind that some good can come out of it. Even if it does identify a problem area, the can potentially recommend some occupational therapy to help.

                              Good luck and let us know how you make out.
                              When I mentioned to my Neuro that I was thinking of trying for disability..I think this was the test he mentioned that I may want to take.

                              Should I try to do my best on this test? If I do well, which not sure if I will.. but if I do well, will this be a determining factor as to whether or not I receive disability??

                              Ms. Jay

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