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Thread: I’m back!

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  1. 06-15-2019, 06:34 AM #1
    ewizabeth's Avatar
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    Red face I’m back!

    Hi everybody
    I’m an old member of the group here since about 2002 or so. I’m “retired” and on disability now. My neurologist tells me I’m very lucky though he’s the one who suggested it was time to stop working. I still walk with great effort but I have a lot of pain and fatigue. I take a lot of medications as I’m sure many of you can relate to. I’ve been off MS meds since October. My MRI shows lots of big, old lesions but I haven’t had new ones in over a decade. They’re trying to get me approved for Ocrevus. I stopped Aubagio because of severe GI side effects. But I’ve noticed that my old symptoms have been in overdrive since I’ve been off treatment. I’m 61 years old now. So here I am again.
    Take care, Wiz
    RRMS Restarted Copaxone 12/09
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  2. 06-15-2019, 07:17 AM #2
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    Wiz is here!

    I remember you! Welcome back!
    ~ 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.
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  3. 06-15-2019, 12:20 PM #3
    KoKo
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    Quote Originally Posted by ewizabeth View Post
    Hi everybody
    I’m an old member of the group here since about 2002 or so. I’m “retired” and on disability now. My neurologist tells me I’m very lucky though he’s the one who suggested it was time to stop working. I still walk with great effort but I have a lot of pain and fatigue. I take a lot of medications as I’m sure many of you can relate to. I’ve been off MS meds since October. My MRI shows lots of big, old lesions but I haven’t had new ones in over a decade. They’re trying to get me approved for Ocrevus. I stopped Aubagio because of severe GI side effects. But I’ve noticed that my old symptoms have been in overdrive since I’ve been off treatment. I’m 61 years old now. So here I am again.
    Welcome back Wiz!

    Looking forward to having you around here more often.

    Take Care
    PPMS for 21 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~
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  4. 06-15-2019, 05:10 PM #4
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    Hi Wiz! Nice to see you again
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic
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  5. 06-15-2019, 10:33 PM #5
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    Hi Wiz! It's always good to see old timers like yourself come back. Good luck with Ocrevus - lots of people here are on it and seem to be doing well enough. Hope to see more of you
    1st sx '89 Dx '99 w/RRMS - now SP w/o flares
    Administrator Message Boards/Moderator
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  6. 06-16-2019, 03:08 AM #6
    Jules A
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    Hi Wiz!
    Welcome back!
    Jules
    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
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  7. 06-17-2019, 01:19 AM #7
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    Hi Wiz and welcome back. Great to see you return.
    Kathy
    DX 01/06, currently on Tysabri
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  8. 06-22-2019, 06:45 AM #8
    MyGirlsMom
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    Hi! Welcome back!!

    I am in a similar situation in my late 50s. Now no longer working 😕 and off meds. Probably will start ocvrevus by the end of summer as I have more symptoms and some profession but no new lesions in the past decade. MS is a crazy and difficult disease...solutions are never clear.

    Glad to see your name!!
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  9. 06-25-2019, 12:31 AM #9
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    Thanks everybody!

    It's good to see the same folks here. My doctor's nurse is working on getting me started with Ocrevus. My insurance (BCBS) denied the coverage but Medicare will pay 80%. I'm getting the Genentech assistance for the remainder. I'll have to pay the infusion center administration fees. It's done at a small local hospital.
    Take care, Wiz
    RRMS Restarted Copaxone 12/09
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  10. 06-25-2019, 06:35 AM #10
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    Quote Originally Posted by ewizabeth View Post
    It's good to see the same folks here. My doctor's nurse is working on getting me started with Ocrevus. My insurance (BCBS) denied the coverage but Medicare will pay 80%. I'm getting the Genentech assistance for the remainder. I'll have to pay the infusion center administration fees. It's done at a small local hospital.
    Good luck Wiz!

    Let us know when you start the Ocrevus treatment, and how everything goes for you.

    Take Care
    PPMS for 21 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~
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  11. 06-27-2019, 10:36 PM #11
    robert152
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    Elizabeth,

    If you have straight Medicare with a supplement and Medicare pays 80 percent the supplement has to pay the other 20 percent. That’s what I like about Medicare, the insurance companies have no say in the matter, if Medicare pays they have to pay, if Medicare doesn’t pay they do not pay.

    If you have a managed care plan it’s a different story but it sounds like you have straight Medicare.
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  12. 06-29-2019, 08:56 AM #12
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    Quote Originally Posted by robert152
    If you have straight Medicare with a supplement and Medicare pays 80 percent the supplement has to pay the other 20 percent.
    I'm someone using the VA medical system and have for many years. The last private insurance I had was years before ObamaCare and last used MediCare long ago when it covered everything. Thus, I'm clueless about private insurance and supplements.

    With that background, could you clue me in an supplements and "modern" MediCare (I'm thinking of leaving the VA system). Any ideas, suggestions (MS related, I'm on Ocrevus too) and even costs (PM me if you feel the need) would be appreciated. TIA.
    58M / RRMS / Dx1987 / Ocrevus
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  13. 06-29-2019, 09:42 PM #13
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    Tia,

    First of all, DO NOT leave the VA system. Just because you are enrolled in the system doesn’t mean you have to use all the services. For instance, I am also enrolled in the system but only use it for two prescription drugs. I use Medicare and supplement for private doctors and hospitals. I stay with the VA because some drugs are very very expensive as MS patients are very well aware of and co pays can run hundred or even thousands a month and are free through the VA. Full disclosure, I do not have MS. My wife does.

    Tia, To begin, could you tell me what state you reside in? Some states have more liberal rules regarding supplements then others.
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  14. 06-30-2019, 04:03 AM #14
    Leenyi
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    Hi Tia

    I am on original medicare along with a supplemental plan from United Healthcare. The supplemental plan covers the 20 percent of part B costs that Medicare doesn't.

    Infusions like Ocrevus are part B. So original Medicare covers 80 percent of the approved cost and the supplemental covers the remaining 20.

    All in one Medicare advantage plans may be cheaper but you aren't allowed to buy a supplemental plan with an advantage plan so you'd be stuck paying 20 percent of the cost of your infusions.

    Good luck!
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