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Thread: Newbie - Hello

  1. #1
    Community Member licorice's Avatar
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    Default Newbie - Hello

    hello all, how is everyone today. i have spms and in canada we don't do anything but manage the pain, which doesn't work. I take lyrica, clonazepam, fiorinal and butorpanol. yes the butorphanal does help, but I can only get two vials every 2 weeks, trouble is that it only lasts a week. don't really like to complain, but at moment am under a hell of alot of stress as my MIL just got dx'd with throat cancer, doc said radiation. MIL is 85 and the freaking hospital just sent her home with that news. I don't think she will make it to christmas. Anyways, that's my story. I used to be on this site years ago as CatInTheHat, if there are oldtimers that might remember me. thanks for your response

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    Distinguished Community Member agate's Avatar
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    Welcome, licorice! I do remember a CatInTheHat here but regret that I can't remember other details.

    It's sad about your MIL's diagnosis. I hope you're able to draw on some resources for support in this difficult time--friends or family, maybe?

    Are you saying that nobody with SPMS in Canada is offered any of the DMDs (the ABCR drugs)? I wasn't aware of that. Or maybe the cost makes them out of the question? If you could have one of the MS drugs, is there one you'd prefer to be on?
    There is nothing like staying at home for real comfort.
    --Jane Austen, Emma

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

  3. #3
    Community Member licorice's Avatar
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    Hi Agate, yes were together on BT then went on PT (remember?). Yes I have been on rebif and copaxone, didn't agree with me. Now it is what it is eh? I know that the USA there a drug (forget the name, but it helps with walking, man I could use that one, but Canada doesn't give this drug the green light, WTF?) the docs I have don't seem to know f all bout anything or they believe that the meds out there like Novantrone is no good. it has side effects you know. Hello? ya I know all about it, idiot) Oh well just keep on truckin, as they say lol. Glad to see you, it's been a long long time. How are you?! talk to you later (yes I do have a strong support, but it is so very hard, seems like this is the time of year for bad things to happen) Gotta be strong for hubby and the children.
    Last edited by licorice; 12-06-2011 at 03:46 AM.

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    Distinguished Community Member SalpalSally's Avatar
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    Whoopee Do and hoorah!!! My old pal from PT and BT is here. Sorry to hear that you are still having that wretched pain, but glad you found us again.:o I wish the old PT gang would come back (well, most of them..lol:o)..
    Love, Sally


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







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    Hi Cat in the Hat. I also remember you:) I am sorry that you are not being treated more aggressively.

    There are people here that have had much luck w Ampyra (walking). Perhaps they will stop by.

    Sorry the pain is not controlled. Bad medicine.

    Best to you,
    ANN
    There comes a time when silence is betrayal.- MLK

  6. #6
    Distinguished Community Member agate's Avatar
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    licorice,

    Hi Agate, yes were together on BT then went on PT (remember?).
    You might have me confused with someone else. I've been here on BT since 2001 but my stay at the other board you mention was very brief indeed.

    Would Ampyra be the name of the drug that helps with walking?

    I've been doing OK here. I moved to another state two years ago and expected a downhill slide after that effort. But I've been lucky so far--only two falls since I moved.

    You're absolutely right--we have to keep on keeping on.
    There is nothing like staying at home for real comfort.
    --Jane Austen, Emma

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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    I remember the name, how could you forget it??

    I am sorry that your pain isn't better controlled. It was the number one problem for me and it took a while and several docs before I got it better controlled that is not to say that the wheels don't come off the cart from time to time.

    Hope you stick around and let us know how you are doing.

  8. #8
    Distinguished Community Member Abby2006's Avatar
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    I also remember the name, been some time back

    Welcome back !



    Abby
    Stand for something or you will fall for anything

  9. #9
    Community Member licorice's Avatar
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    Quote Originally Posted by SalpalSally View Post
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    Whoopee Do and hoorah!!! My old pal from PT and BT is here. Sorry to hear that you are still having that wretched pain, but glad you found us again.:o I wish the old PT gang would come back (well, most of them..lol:o)..
    WooHoo, so glad you're here. Yep I found yas agin. (lol) Yes my sense of humour is still twisted and will be until I die. It's nice to see that a few of the people remember me. Talk to ya later girlfriend.

  10. #10
    Community Member licorice's Avatar
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    Quote Originally Posted by Gary View Post
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    I remember the name, how could you forget it??

    I am sorry that your pain isn't better controlled. It was the number one problem for me and it took a while and several docs before I got it better controlled that is not to say that the wheels don't come off the cart from time to time.

    Hope you stick around and let us know how you are doing.
    Thanks Gary. I think I'll stick around a bit. I will try to be on line more and talk my ole friends. Talk to you later

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