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Thread: What a Surprise!

  1. #1
    Distinguished Community Member Jen's Solitude's Avatar
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    Default What a Surprise!

    Hi Everyone, I have decided to change my username since I registered all over again, but I still answer to Dar. Was totally surprised to see an entirely new set-up, glad I finally decided to check in so that I could join up once again.

    I hope everyone is doing as well as can be expected I am still in the midst of many changes and am getting ready to add Gilenya to my disease management. We are also about to move to Delaware so there is much going on. Please say hey and let me know how you are all getting along.

    Dar/Jen's Solitude

  2. #2
    Distinguished Community Member agate's Avatar
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    I'll say Hi here too. It's pretty clear you're the Dar I "know."

    Moving to Delaware? That is news.

    I'm curious about the new user name. Care to explain?

    I moved to Oregon in fall of 2009, and moving is not my idea of fun. I hope your move will go smoothly!
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  3. #3
    New Community Member
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    Default

    Hi Dar, it's been a long LONG time, I was out of the loop for about 2 1/2 years, the "babies" and I are doing fine, hubby now completely off oxygen use, now he just need to get his diabetes under control once again. We moved a couple months ago from apartment to a 3 bedroom house, the house is small, the living room is TINY but we're managing, hope to save up some money between now and next spring to move once again into a larger TWO bedroom with a garage....that should work out nicely for us. Bearbear and Munchkin took this move much easier than the last one, and they have run of the place since all I have are a few throw rugs, only one room is fully carpeted and they aren't allowed in there.

    Not too sure of the new changes yet to the site, I just hope that it becomes easier to use. Feel free to give a shout.

  4. #4
    Distinguished Community Member Lazarus's Avatar
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    Default Hi Dar!

    So, what's up? Why have you chosen Gilenya? When will you start? My doc suggested it but I am using ampyra (so is SSusan), monthly methylprednisilone pulses and rituxan. The ampyra has given us both mental energy and alertness.The two of us rock!

    Glad to hear your voice.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

  5. #5
    Distinguished Community Member
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    Dar,
    Yay! I was just thinking about you but didn't think a shout out would reach you. You found us.
    How soon are you moving? Gilenya-fingers crossed it's the one. Ampyra has been a wonder for me. I've been on it for a year. I'm walking somewhat better although still pretty limited outside. Inside I am not using Canadian crutch which has been liberating, especially at work and going in a store. Having 2 free hands-what a concept. It's improved energy and mental clarity.

    Taking very little fatigue meds although there are exceptions. Saturday my husband's band played an outdoor gig during day (HOT day) and night time gig at club. I was out from 10:30 in am until 2:30 am. Yikes. I had a great time but I'm still paying. And thank goodness for Ritalin.

    Have you been fishing this summer?

    Great to 'see' you. You've been missed.
    ~Susan
    Be the person your dog thinks you are

  6. #6
    Distinguished Community Member SalpalSally's Avatar
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    Hi Dar, welcome back..
    Love, Sally


    "The best way out is always through". Robert Frost







  7. #7
    Distinguished Community Member Jen's Solitude's Avatar
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    Good Morning Everyone! So nice to "see" you all again. I have a friend who is taking Ampyra so I know how great it is, but Susan and Laz, you two are really doing great! I am very happy for you both. I am still waiting to officially start on Gilenya and I am only taking it because my neuro was not pleased that I quit on Copaxone once again. I will update as soon as I have more information to share but right now the doctors who performed all the necessary scans have yet to fax the results to my neuro and until they do, I am not cleared to take my first pill and be observed for six long hours. ( I know, sounds like fun right?) Have a great day everyone!

  8. #8
    Distinguished Community Member
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    Hi Jen, do keep us updated about the Gilenya. We haven't had a lot of input about that one yet. Hope you get to try it and that it is a miracle.

    Virginia
    Virginia

  9. #9
    Community Member Lady's Avatar
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    Hi ya Dar,
    It's been too long. Delaware, good for you. You and your DH? I hope the new medication does wonders for you. I had the CCSVI procedure and doing great. (Big Grin) We are all unique in what works for us. Great to hear from you. Keep us updated okay?

    Crystal I'm not sure about. Hmm (thinking)
    Lady


    May happiness be at your door. May it knock early, stay late, and leave the gift of good health behind.

  10. #10
    Distinguished Community Member Jen's Solitude's Avatar
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    Good Morning Virginia and Lady! Yes DH and I are just waiting for the Bank to finish their part of the process which is one experience I hope never to have to repeat! I am trying to get through the end of their involvement to then move on to beginning Gilenya. I just might have to bug all the doctors again, if they still haven't faxed over their reports to my neuro. I am writing about my experience and will include the link when I finally complete the first part of my experience.

    Dar

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