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Getting affairs in order (pre dx) and questions about drugs.

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    Getting affairs in order (pre dx) and questions about drugs.

    Hi all,

    I am pretty overwhelmed right now with what I believe is another exacerbation. I have not yet been diagnosed and quite frankly don't want to be until I make sure I get my financial house in order to protect my wife and children. Sorry for the long post, I appreciate any advice I can get.

    I am in my early thirties. In 2001 I had an unexplained episode of nystagmus that lasted just under a week. An MRI found that I had multiple lesions on my brain that were unexplained. I was subsequently referred to a major city's neurologist who reviewed the MRI but told me at the time that it looked like it probably was MS but because I lacked two episodes a formal diagnosis could not be made. My grandfather also had MS but he passed when I was little and my only memories of him were being bed-ridden.

    I got better and quite honestly pushed it out off my mind for the longest time. In 2006, I had another "exacerbation" which caused me to feel like my upper left leg was on fire. I figured I pinched a nerve and after a week or so it went away. In 2007, I had an episode of vertigo which caused a crazy amount of vomiting. I had to be kept overnight for that one. The doctor (not knowing of my past) classified it as caused by an inner ear infection. I recovered fully and quickly forgot about it and believed the doctor and perhaps just not wanting to put things together. Then all of a sudden last week I developed a burning sensation (like when you sit too close to a fire) and tingling on my left side, from just below my rib cage to my toes. It is now day 5 with this and it is not as strong as it was two days ago, it is still there.

    My wife wants me to go to the doctor, but I don't want to as I know a formal diagnosis will make me pretty uninsurable. I have bought time by agreeing to keep a log of my symptoms. I have a stable job in education with good benefits. I have a separate 10 year term life ins. policy to protect my family. But I am now thinking I need to get a private LTD policy and a longer-term life insurance policy (since after the term is up I doubt I can get a new policy). Should I also look into long-term care policies?

    Finally, I have been fortunate in that if I do have MS, it seems to be of the RR-MS type at this point. What benefit does going on drugs have? Am I being more damaged everyday I am not on meds? Or is it just something that helps control exacerbations? I hate to get all sappy, but I just want to be able to provide for my family and be there for my kids as they grow older.

    Any advice on what things I should do at this point would be greatly appreciated and I am sorry for the novel.

    #2
    The Next best available alternative

    I am 71 with SPMS working part time and a 50 yr hx of MS. Turned down for insurance 4 years after initial and first single episode of optic neuritis. MS was suspected and correctly too.
    Insurance companies look after their stockholders first.
    You need a game plan. What makes you feel most comfortable? Can you beat an insurance company 10 yr from now when you have pissed away your money in insurance premiums and they decline the claim as due to a pre-existing condition
    Does your wife work? Can you in invest money?
    Get trusted legal advices. Client privilege appears stronger than physician/patient if medical info is what insurance companies will want

    Comment


      #3
      You are very smart to be thinking this way. One of the most important things to "get on" as early as possible is financial planning.

      When I was still being tested for possible stuff (and BEFORE I got a diagnosis of CIS), I spoke with a well-regarded insurance broker and he told me that if I had been tested through MRI/LP, etc. for suspected neurological disorders (and they were not categorically ruled out) I would be turned down for LTD. That, at that point, I was already ineligible. But that was some years ago, so please consult with an insurance broker as soon as you can. Maybe it will be different for you.

      Regarding the DMTs, it is a personal choice. I have taken then from early on despite being relatively well because I have a low-risk-tolerance when it comes to possibly being disabled or losing my mental capacity to work. At times for me the drugs have been harder than the MS, but I'm in a pretty good place now (on Tysabri). There is mounting evidence on the long-term benefit of getting on DMTs early, both in reducing flares (FYI, I have not had a second flare yet -- almost 9 years), and in slowing progression/brain atrophy.

      Maybe I won't end up to have needed them, but I personally don't want to take that chance. It's up to you and your family and your doctor, of course.

      Good luck and keep us posted.

      Comment


        #4
        I agree with what others have posted. For insurance coverage, most insurance applications will ask for information about MDs you have consulted during the past 5yrs. Any abnormal test results or sx such as Optic Neuritis will result in coverage being declined, even if test results were inconclusive at the time, and without a definite dux.

        Some insurance is what's referred to as 'back end loaded', meaning even if a policy is issued, if you file a claim for benefits within a 5yr period of time from the date of your application for coverage, with abnormal but inclusive test results, your claim can be denied as pre-existing, particularly for income replacement and life insurance.

        For back end loaded type policies, some state insurance laws require either the claim be approved or if denied as pre-existing condition, all premiums that were paid are refunded.

        You can take the risk that your MS remains stable until the 5yr 'look back' period into your medical history has expired, but unless you live in a state that requires a refund of premiums within the 5yr period your claim may be denied in addition to the loss of funds paid toward the premiums.


        Wishing you the best and take care.

        Comment


          #5
          Originally posted by MSW1963 View Post
          I agree with what others have posted. For insurance coverage, most insurance applications will ask for information about MDs you have consulted during the past 5yrs. Any abnormal test results or sx such as Optic Neuritis will result in coverage being declined, even if test results were inconclusive at the time, and without a definite dux.

          Some insurance is what's referred to as 'back end loaded', meaning even if a policy is issued, if you file a claim for benefits within a 5yr period of time from the date of your application for coverage, with abnormal but inclusive test results, your claim can be denied as pre-existing, particularly for income replacement and life insurance.

          For back end loaded type policies, some state insurance laws require either the claim be approved or if denied as pre-existing condition, all premiums that were paid are refunded.

          You can take the risk that your MS remains stable until the 5yr 'look back' period into your medical history has expired, but unless you live in a state that requires a refund of premiums within the 5yr period your claim may be denied in addition to the loss of funds paid toward the premiums.


          Wishing you the best and take care.
          Here's what I am thinking though, since my only MRI was back in 2001 and nothing in my file would say MS, I am thinking I can squeak by and get LTD. I've only seen my PCP three times in the last 5 years for two physicals and one sinus infection.

          Now maybe that's just too easy and they will still find a way to refuse to underwrite or decline a claim, but without the concrete evidence I wonder. Part of me wonders if it is even worth it. Don't most cap coverage at around 60% of income including any Social Security? If I were to become disabled I would be eligible to collect a state pension (@ 25%) early, that plus SS would equal 65% of my income. Now if I can get LTD and get 60% through LTD and SS PLUS get another 25% from the pension it may be worth it.

          Ugh, this is so complex. Thanks for your reply.

          Comment


            #6
            Consider consulting an insurance agent, or a broker. You don't have to disclose medical info during a consultation, and an initial consultation might be helpful.

            Also, any group employer STD/LTD available usually has a 2yr look back period for preexisting conditions. A broker or agent could advise you about getting the highest ER group coverage, because increasing converge at a later time will re-starts the look back period, like it's a new policy.

            Keep us updated, the info could help others here. Good luck.

            Comment


              #7
              Not much to add that hasn't been said, but in proving preexisting condition, you only need treatment, not a diagnosis. Also, I know my carrier could pull medical visits and prescription history from health insurance carriers. I forgot to give them one doctors name and they pulled it that way.

              I had a private LTD policy that was approved, but it had a preexisting clause that no benefits payable if claim made within first two years. I was only able to get it since they had an open enrollment thru employer. I lucked out. But the private amt was much less, only 25% of income.

              My employer group plan is 60%, and you are correct, if you have group LTD, the insurer offsets social security, so insurer is only on hook for difference between the two.

              Private LTD is not affected by social security. Most of group and dome private plans also have clauses about other offsets, so if work part time, can offset that as well.

              I would consult a financial adviser who is familiar with disability and long term care.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                A consultation will allow you to 'shop' insurance applications without submitting an app or disclosing medical info. Also, many insurance co's maintain data on all applicants, that combined with 'affiliate' insurance policies marked under a subsidiary insurance co., using a different insurer name, once you are declined by one subsidiary, your personal info like SS#, name, phone number is 'in the system' and you will likely be denied coverage by all subsidiary insurance companies.

                Comment


                  #9
                  I was trying to strategize like that. When I first suspected that it's might really be MS, I called a LTD agent. He was researching policies for me and I was ready to get into whatever I could.

                  In the meantime I went to the neurologist who ordered an MRI. While I was waiting for the results of the imaging, I disclosed to the agent that there was a possibility I could have MS. I wanted to know if I could get a policy before a diagnosis.

                  The agent was very blunt with me. He said, "if you get a policy and then find out you have MS, your policy will be cancelled."

                  So you are smart to be thinking about this but it may be too late. On the other hand, if you can get a LTD policy and turn out not not get a diagnosis, time to celebrate.

                  Comment


                    #10
                    many employers include long-term disability as one of the "perks". Check with the hr department, but do not disclose why. I don't know much about this, and you may have alreadydone this.
                    most of the medications help to prevent disability. Many have different success rates, so do your homework carefully. I do not know if you need a diagnosis to get a prescription for the medication.
                    Good luck to you
                    hunterd/HuntOP/Dave
                    volunteer
                    MS World
                    hunterd@msworld.org
                    PPMS DX 2001

                    "ADAPT AND OVERCOME" - MY COUSIN

                    Comment


                      #11
                      I know you mentioned your 10 year life insurance policy. If it's possible to get another term life policy, you should get it for longer than 10 years...maybe 20 or 30, depending on how old your kids are.

                      The reason: if you are diagnosed, when that 10 year life insurance policy runs out, and you are diagnosed, there is no way to get any more life insurance.

                      I look at life insurance as a way of dealing with finances in the event of a death. It's a cushion for your wife, and kids, to help with expenses and to help with the loss of an income of one person. Once your children are grown, it's not as important, IMO.

                      If you have a 20 year term life, the payment stays the same for the entire time, so if they'll write you a policy now, it would be a good thing. I was able to get a life insurance policy even though I had been checked out for neuro problems. But I'm 99 percent sure they will not write anyone with MS a life insurance policy.

                      Comment


                        #12
                        Thoughts

                        I was dx in 2013, also in my early 30s. I suspect you're too late for LTC insurance as others have been saying, but from my experience with friends aging with chronic illness, the payments aren't great, the monthly premiums are very high even for completely "healthy" folks, and as you point out, there are many ways a company can and will deny a claim.

                        If you have a couple hundred bucks to throw at LTC insurance each month, you could do what I'm doing instead (since I'm not eligible for it either)--sock that money away into something like a Roth IRA, where you can access those funds without penalty if you need them, but where they'll make money in the meantime. Increase your automatic retirement contributions to whatever plan your employer offers (401A? 401k?) to the max. And talk to a financial advisor about establishing an annuity, something you save into now for payments when you can't work anymore. Any of those is much more secure than hoping an insurance company will cover you completely, and paying way too much money to discover they won't.

                        There are ways to take care of your family without depending on the kindness of insurance companies, and the earlier you start, the more secure you'll be. And a quick word about caring for your kids: I have 3 stepdaughters in college, and we discovered that there is a lot of financial aid available for them (not just loans--grants, fellowships, scholarships, etc), which we hadn't known about before. We had saved very little for them, and it worked out OK. But, of course, there is little to no financial aid for your retirement or medical needs, so save for those first. This, too, is a way of taking care of your children--not burdening them with the cost of your care later in life.

                        Comment


                          #13
                          i thought u could no longer be turned down by a pre-existing condition?!
                          MS dx's 2000
                          Tysabrian

                          ¤ fate is not just who's cooking smells good, but which way the wind blows ¤

                          Comment


                            #14
                            allHailye2, health/medical insurance is the only type of insurance that is prohibited from denying coverage based on a pre-existing condition. In late '90s HIPAA laws introduced first wave of 'limitations' on insurers to deny medical coverage for a pre-ex. Passage of ACA (Affordable Care Act) prohibits denying medical insurance based on medical history or a pre-existing condition.

                            With the exception of employer based group health plans, for instance an individual medical policy will be premium rated based on the dx of the applicant, and the premiums can be unaffordable for many with a MS dx.

                            All other types of insurance coverage, LTD, LTC, Life and some annuity/investment products still use medical history and pre-existing conditions to base decisions to insure or deny coverage.

                            Comment


                              #15
                              Getting affairs in order (pre dx) and questions about drugs.

                              I would take a different track and encourage early treatment with the range of medications now available. When you grandfather had the disease there was probably no medical treatment. Now there is a wide range of treatments options some of which are recent. Starting treatment early you may be able to work full time until you are 55 years (who knows). But its vital to start as early as possible. Insurance is important but you maybe able to work at least until you are 50 provided treatment starts early.

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