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Quynh-Loan Luong

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@loanluong

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  • Profile picture of stana granch

    stana granch and Profile picture of Quynh-Loan LuongQuynh-Loan Luong are now friends 1 year, 6 months ago

  • Profile picture of Quynh-Loan Luong

    Quynh-Loan Luong replied to the topic Spasticity treatment in the forum Parents​ ​and​ ​Caregivers​ 1 year, 10 months ago

    Thank you Ed and John for pointing out my error.  I tried Baclofen twice and under the care of two different neurologists and some other spasticity med but they didn’t work, but made me feel like a slug – unable to move my legs/a bound slug.  I am lucky, so far, that I have no pain with my spasticity.  CBD used to relax a teeny then stopped.  Liv…[Read more]

  • Profile picture of Quynh-Loan Luong

    Quynh-Loan Luong started the topic Spasticity treatment in the forum Parents​ ​and​ ​Caregivers​ 1 year, 10 months ago

    Hello everyone,

    I have spasticity on half of my body (top of my head down to toes) that is severe enough to adversely affect my walking, make my neck, shoulder, arm. hand, torso, and leg feel like they are tightly bound.  The usual suspects of drugs and CBD do not work for me.  Do you know of anything that would work?  Thank you for your ad…[Read more]

    • Profile picture of Ed Tobias
      Ed Tobias replied 1 year, 10 months ago

      Hello Loan,

      Welcome to the MS forums. I’d suggest that you re-post this question in the “Living With MS” section. You’ve posted it the “Parents and Caregivers” section and I don’t think it will get any views there.

      Ed

  • Profile picture of Quynh-Loan Luong

    Quynh-Loan Luong replied to the topic Are you over 55 and deciding if Ocrevus is right for you? in the forum MS Medications 2 years, 5 months ago

    Thank you Ed.  Now I have been hoping for FDA approval of the PoNS.

    Loan

  • Profile picture of Quynh-Loan Luong

    Quynh-Loan Luong replied to the topic Will you be asing your neuro about Mayzent? in the forum MS Medications 2 years, 5 months ago

    I have been on Mayzent for SPMS for a week now.  So far so good.  It’s much easier than Ocreveus and the drug is shipped to you.

  • Profile picture of Quynh-Loan Luong

    Quynh-Loan Luong replied to the topic Are you over 55 and deciding if Ocrevus is right for you? in the forum MS Medications 2 years, 5 months ago

    Hi again!  My side effects were just minor skin infections.  But, Ocreveus didn’t help me. I read on one of the forums that it is more effective with men.   I was switched to Mayzent this month – so far so good and easy too – a small pill a day.  I am 58 and still limp with a walker (spasticity over half of my body, the other half is weak) .  D…[Read more]

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    Quynh-Loan Luong replied to the topic Too old to be treated? in the forum MS Medications 2 years, 6 months ago

    Don’t let your chronological age dictates your treatment.  I’ve seen people in their 70s and 80s more youthful and active than people in their 30s or 40s.  At the first meeting with my neuro, he told me that his other MS with as much brain damage lived to 93.  I was 54 at the time.  Older now and looking forward to beating that record and usi…[Read more]

  • Profile picture of Quynh-Loan Luong

    Quynh-Loan Luong posted a new activity comment 2 years, 6 months ago

    Thank you Ed. Earlier this year I was prescribed Mayzent. I was gungho to try a new medication, hoping something would help. After undergoing all the pre-med tests and waiting for the med rep to call, I changed my mind and, after notifying my doctor, went off meds. I don’t want to eventually have comprised liver function and untamed MS.…

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  • Profile picture of Quynh-Loan Luong

    Quynh-Loan Luong replied to the topic Are you over 55 and deciding if Ocrevus is right for you? in the forum MS Medications 2 years, 6 months ago

    I am 58. I was on Ocrevus when it came out and I was ~55. It didn’t help me. I was downgraded from RMS to SPMS.

    Loan

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    Quynh-Loan Luong became a registered member 2 years, 6 months ago

    • Profile picture of Kevin Schaefer
      Kevin Schaefer replied 2 years, 6 months ago

      Hey Quynh, welcome! I’m Kevin Schaefer, Forums Director for this site’s parent company. Please let me, or moderators Ed Tobias and John Connor, know if you have any questions. And feel free to introduce yourself in our welcome forum. Thanks for joining us!

    • Profile picture of Ed Tobias
      Ed Tobias replied 2 years, 6 months ago

      Hi Loan,

      We’re glad to have you join with us on the MS forums. I’m sorry that Ocrevus didn’t work for you but I hope that you’ll be able to find another medication that will work. Please let me know if I can help you find any information.

      Ed

    • Profile picture of Quynh-Loan Luong
      Quynh-Loan Luong replied 2 years, 6 months ago
      Thank you Ed. Earlier this year I was prescribed Mayzent. I was gungho to try a new medication, hoping something would help. After undergoing all the pre-med tests and waiting for the med rep to call, I changed my mind and, after notifying my doctor, went off meds. I don’t want to eventually have comprised liver function and untamed MS.…

      [Read more]

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