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Thinking ahead - MS

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    Thinking ahead - MS

    I am thinking ahead - I do not have any type of diagnosis yet, but my personality makes me think things through all the time and try to prepare as much as I possibly can for a very uncertain future. I am currently employed at a law firm with very strong employment law practice. I work in HR so I am well aware of our benefits (std then to ltd if it comes to that). Once I get a diagnosis, should I inform my job? I am considering it because I will most likely have a lot of dr. appts. to attend and from what I have seen, because of what my job does, we are very accommodating to those with disabilities and in a way it would make me untouchable from any type of job action (btw I am an excellent employee with consistent increases and excellent reviews). What are your thoughts on this?
    Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

    #2
    My atypical MS presentation, employment and disclosure experience was very adversarial. My employer, a large insurance association that specialized in mitigating loss, including HR loss mitigation services. My advice would be don't disclose until you have no other choice either because of a need for accommodations, or FMLA leave.

    I worked for a large insurance company for 12yrs, the last 2yrs I was struggling with fulltime MS, with adopted infant daughter. Major downsizing with 600+ employees including my department. I was recruited by the insurance 'association', relocated with corporate housing and all relocation expenses paid for over a year.

    When word got around that I was evaluated for MS, my department was downsized. I was the manager but last hired, first fired, plus I was sick and the potential of an LTD claim, I was very unceremoniously fired with STD and not much more in terms of benefits, because they were mitigating losses.

    Best of luck to you. I hope your experience works out and keep us updated.

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      #3
      I'm in IT where planning is a big deal so I'm the same kind of "thinking ahead" person that you are. I'm also a newbie here and am, therefore, not an expert. There are people more knowledgeable here than I am.

      We are all allowed to have medical issues in our lives. There are a lot of things that could cause you to have a lot of doctor appointments that aren't MS. Telling your employer that you have a doctor appointments should be enough. They already know you aren't a slacker. People will be curious but only your close friends or the incredibly nosey will ask. Saying you have some issues and are trying to figure out what's wrong is more than enough. Hopefully there will never be a need for them to find out.

      Even if you get an official diagnosis of MS you should still consider keeping it close to the vest. If the situation arises when it is important for your employer to know, that is the time to speak up. When is it important? It becomes important when the disease visibly affects your work performance. If you feel your performance is suffering due to MS then it is best that you bring it up first. In the kind of work environment you describe you don't want to put your boss in a position where they have to tell you that you aren't getting the job done.

      That is the approach I am taking. I've been recently diagnosed with RRMS. I am a self-employed computer consultant and like what I do. Although I am nearly at retirement age I plan to keep supporting my customers as long as they want me and as long as I can. My biggest fear is loss of cognitive skills. For this I have an iPhone app (MindGames Pro, but there are others) that should give me advance notice that I'm slipping. If and when I get that indication I'm going to pull the plug. I want them to remember me the way I was and not the way I will be.

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        #4
        I'd also suggest consulting with a financial planner to get your financial and individual insurance needs covered before an official MS dx is made. If you already have abnormal MRIs, even without a dx, you may be uninsurable, particularly for Life, annuity investments, etc., if abnormal MRIs are within 5yrs of insurance application.

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          #5
          I would not disclose. Most everything I read said not to disclose unless you have an accommodation need to allow you to continue to work.

          If getting time off for testing and appointments is an issue, ask your doctor for intermittent FMLA leave, even then no disclosure needed. Just that medical for you.

          Good luck to you.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            One other thing, LTD is managed by the insurance company, unless your company self insures. So while your employer one day may agree you are disabled, it is the insurance company ultimately that determines it. My bosses and coworkers were all silenced by HR and legal, not allowed to give input on my behalf, even though all great reviews and prior discussions/ accommodations with HR on disability.

            I would be careful thinking that because it is a legal employment law practice, they will fight for you if needed. One would hope, but I have read horrendous stories. It is a good precedent they seem disabled friendly. I hope you never need to find out.

            I would make sure to really understand the STD and LTD policy language and how FMLA works in your firm.
            Kathy
            DX 01/06, currently on Tysabri

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              #7
              Additional thoughts:
              Just read someone advised getting life insurance prior to obtaining an MS diagnosis. In my experience, State Farm acted like I had cooties and spazzed faster than a horse jumping away from a rattler. Then their agent tried to commisserate with me and say he knew a family whose kids had it "bad, the youngest kid's mind is gone, blah blah blah." What an idiot.

              MetLife and Erie both added me to a policy in the same class as smokers, didn't even flinch. So...yeah, you're liikely to get better rates if they don't know, but they won't automatically bar you from a policy either.

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                #8
                Just keep thinking, it's a good thing. My story is too long, but I worked with
                MS for 26 years. I hit retirement before disability.

                Had to hide it initially - I was a design engineer and senior reactor operator at a couple nuke plants (people didn't know much about MS then). I ended up retiring from NASA, I was one of the shuttle mission managers. People knew I had MS but never discussed it.

                I did get independent life insurance real quick after moving 1500 miles from one nuke plant to another nuke plant (all records were paper then). The only thing I can't get due to MS is long term care. I don't know if you can give blood. That seems to change every 2 or 3 years...

                Tom
                "Doubt is not a pleasant condition, but certainty is an absurd one."
                - Voltaire

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