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Terrified

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    Terrified

    Hello,

    I don't know what to do with all of my fear now that I've read almost everything there is on the internet about MS other than say... hello? here.

    I had a neurological workup about 8 years ago due to a series of some "weird nerve pains" in my hands and feet. The MRI showed some lesions but the neurologist said they "didn't look like typical MS lesions" and he sent me away with an "idiopathic peripheral neuropathy" diagnosis and mentioned offhandedly that I should probably repeat an MRI in another year. Well, my symptoms resolved and he hadn't seemed very concerned and frankly I liked his non-diagnosis, so I forgot about it and I didn't continue looking for answers.

    Over the years since then I've had a half dozen or so of these episodes which I came to think of as my "weird tweaky nerves", all along attempting to treat attention issues as "ADD". Now with another pain/weirdness in my foot that has been here for a couple weeks, I am on my way to neurology for another workup and after spending the last week reading about how MS often manifests and is diagnosed, and after giving real attention to my cognitive issues (inattention, memory lapses) and near-constant fatigue, and to the odd little sensations I have around my body, I am almost certain it is MS. And I am terrified. I'm 44. I'm single. I live by myself and work for myself. I'm feeling very alone and terrified.

    I'll be seen in a week and will learn more, but now my head is spinning with wondering how long I've possibly had this (seems like probably a decade or so), what the progression might be, what kind of drugs I would best take, how I would pay for this life reality, whether I should make a health insurance move in the next month while I can (stay with my current HMO (Kaiser) or pay more for a PPO to see the specialists of my choice, etc.), how I would DO this being by myself?!

    I know I'm probably getting ahead of myself and worrying before I even have the info, but... that's what's happening, and I figured this might be a place to get some support or at least company along the way...

    Thank you.

    #2
    Sorry that you are in a limbo stress state. Please read carefully before changing any insurance health or disability wise.

    I got the dx alone, in midst of divorce, no support from family BUT- friends provided the safety net of support. My dogs were a great source of comfort. I played guitar a lot even if poorly. Music was a huge emotional release.

    What is your release? Whether or not you have MS, it is worth decreasing stress.

    Nowadays I do a lot of yoga. If you can fit that into your day it is so worth it.

    Comment


      #3
      Originally posted by Atmospheric View Post
      Hello,
      I don't know what to do with all of my fear now that I've read almost everything there is on the internet about MS
      I understand your fear. You are going to hear a lot of people tell you their stories as a way of relating. I am also recently officially diagnosed after 20 years of symptoms and tests. I too was perfectly happy with the non-diagnosis. You are on the right track, toward getting proper care. There are DMTs out there now that are essentially proven to keep it from getting worse, and important developments are being made all the time in MS research. My doctor said this is a "good time" to be diagnosed. Big hugs to you.

      You asked an insurance question. I was on a PPO through the ACA when diagnosed in early 2018, and was very glad about that. It gave me the ability to explore different networks as I settled into the right care team. Since you're going in, in a week, you will probably have a better idea of the kind of tests you might be facing into 2019. It can take a long time to get answers, so your best gamble could be a PPO.

      You have great resources on these boards. The National MS Society is also fantastic. Please stay and let us know what is going on with you.
      All the best, ~G

      Comment


        #4
        Hello,

        I am deeply sorry about the health situation which led to your post. I agree with the advice to proceed slowly and thoughtfully if contemplating insurance changes.

        However, since you do work for yourself long term disability insurance may be something critical to your financial well-being if your health concerns do not go well. Of course, many people with MS never become disabled. My spouse is one of those and she was diagnosed in 1982. But you may want to consider securing that type of insurance prior to any diagnosis which could disqualify you from it. Some policies have a benefit period of 3 years or 5 years but others have a benefit period lasting until retirement. So you would want to know the benefit period, for sure. Insurance is important for your peace of mind and may become a critical means of support. Please be wise. Err on the side of caution. You have enough concerns to think about right now w/o worrying about your financial future, also.

        As far as MS medicines go, if that is ultimately diagnosed, I firmly believe Tysabri is the best choice followed by Ocrevus. Lemtrada would be third, IMO, and the rest would be toss a dart. There are 3 orals.

        Since you are self-employed it may be appropriate to list the cost of some of these meds. These figures are cost per year and were complied by the U of Oregon and presented at ECTRIMS a few weeks ago. I will provide a link below for you to check out more costs if you wish. The average cost of a MS med was $78,000 per year in 2016 compared to $16,000 in 2004.

        http://multiple-sclerosis-research.b...opy-drugs.html


        Gilenya… $86,637

        Tysabri… $75,792

        Lemtrada… $71,258

        Copaxone… $84,707


        You may feel overwhelmed, frustrated, disappointed, possibly a whole range of emotions. Please go slowly. Take one step at a time. The single thing I wanted to mention at this point is protecting your financial future with insurance.

        I am so sorry you even have to consider these things. My heart goes out to you. I am praying for strength and peace to settle your heart and mind. Whatever your health situation turns out to be I believe you will rise above it and live a better life than you can imagine presently.

        Comment


          #5
          Hi atmospheric,

          Take a deep breath and try not to go crazy reading everything on the internet. It won't help you right now.

          I was 42 when diagnose, employed with a new employer, and single. I had what would be a relapse in 1993, with MRI, followed for a year, with no diagnosis and to come back if other problems. Fast forward, 2006, a relapse that led to diagnosis. A few minor episodes in between, but always resolved quickly on own, with exception of numbness in right arm. I dismissed, thinking from computer use.

          Now on Tysabri and have been stable on it.

          Even if diagnosed, a few things that are viewed as favorable in prognosis:
          Sensory as first symptoms and long period between first and subsequent events with new symptoms.

          As for cognitive, there is a difference in subjective versus third party observations. If it is an area of concern, whether MS or not, you may want to ask neuro about a neuropsychologist evaluation to get a baseline. It also can give insight if fatigue contributing versus actual cognitive deficit.

          Before any health or LTD insurance changes, make sure you read the policies. For LTD, make sure you know what you are paying for. Some may have pre-existing condition clauses, that would exclude coverage for any condition prior to policy and may define as pre existing as seeking treatment, not just diagnosis. Others may cover pre-existing with a look back period, say 2 years. Which means they will only pay if claim made aftr two years of policy coverage.

          As for employment, you may have to look at probably and cons of staying self employed versus becoming an employee.

          Good luck with appointment. Let us know how things go.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Originally posted by Myoak View Post
            Gilenya… $86,637

            Tysabri… $75,792

            Lemtrada… $71,258

            Copaxone… $84,707
            Atmospheric, Those numbers might look overwhelming. Treatment costs are one of the things that upset me nearly as much as diagnosis. However, right now several of the large companies that produce the above DMTs have financial assistance programs if you qualify. Example: I'm self employed too with a policy under the ACA, and I qualified. My costs are extremely low. This is of course if you and your doctor decide to go in the direction of one of those DMTs. All the best, G
            All the best, ~G

            Comment


              #7
              Thank you

              All - thanks for your witnessing, and support, and advice. It helps me feel less alone. So so much to think about. Long term care insurance has never even entered my consciousness. But it sounds like now that I am having symptoms and possibly on my way to a diagnosis, it wouldn't even be an option at this point...

              Comment

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