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Thread: Narcoms survey is an excellent time for reflection (for me anyway)

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    Lightbulb Narcoms survey is an excellent time for reflection (for me anyway)

    It's interesting to go through the process of the survey. If you were to ask me how I am doing in terms of MS right now, I would say great. In so many ways that is true! Yay.
    However, there are some areas in which my MS sx have increased.

    Ampyra has been a miracle in terms of fatigue and cognition. I have a tremor in one hand that continues to get worse (fortunately it is not the hand I write with). I think that may be the Ampyra. If it is, I'll take it in trade for more energy and a clearer head.

    My vision continues to get worse. Scary.

    The process of reflection is healthy for me .

    Just thought I'd share it with you guyz.

    Happy Holidaze! It's the first night of Hanukah. I love the ritual.
    ~Susan
    Be the person your dog thinks you are

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    Distinguished Community Member agate's Avatar
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    Happy Hanukkah!

    Do you have side-effects from Ampyra? Did the tremor come on after you started taking it?

    Sorry that some of your MS symptoms are worse.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Hi Agate,
    I don't have sx from Amypra aside from my suspicion that my tremor which I've had for years has gotten worse and Ampyra is a factor. (My user name, ssusan, is an ode to tremor. I came here in 2000) It may be unrelated. I don't want to ask drug company. I am not coming off of it regardless.

    I am profoundly better in most areas, just that and vision are worse. Going through survey forces me to break down personal evaluation of all. H***, I am able to teach for first time in 5 years.

    Happy whatever your choice of celebration is ;-) We are a bi-celebrational family; (menorah and lighting candles... is my family's tradition, x-mas tree ...is my husband's. We love both)
    ~Susan
    Be the person your dog thinks you are

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    I had given some thought to Ampyra, but I already have a tremor and for some reason I decided not to ask my Neuro about it because of this. I may have read something, but I can't remember where or what.

    Susan, I am so glad you are doing so well overall. While you have progressed in some areas it seems you are happier and busier than ever.

    I don't know about the rest of you, but I can look back and see progression from year to year now and I just hate to think like that. I hope it at least slows to a crawl.

    Virginia
    Virginia

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    Virginia, I have had to force myself to do the survey at times when things are going only downhill and quickly. I have done it because I committed myself to it for research purposes, but I know exactly what you mean.

    Because of having had a heart attack I am not a candidate for research because of the additional variable. I am participating in the Accelerated Cure Project but that is primarily a very extensive questionnaire and interview for a data base with blood work thrown in.

    Anyhow, I want to contribute to research in some way.
    It was a nice awareness of how some things have really improved. I just came back from my pt-time teaching gig. It's only 2 afternoon classes a week. I hadn't been able to teach for 5 years. I really missed it. It took a few weeks to get back in the groove, but it has happened.

    How Susan got her groove back ;-)
    Last edited by ssusan; 12-21-2011 at 04:38 PM.
    Be the person your dog thinks you are

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    I am so happy for you Susan. It is so good to hear someone say they are going up and not down with this disease! I know it may not be a tremendous amount, but whatever it is just enjoy it.

    Virginia
    Virginia

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    Absolutely!!!
    Be the person your dog thinks you are

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    Default SSusan

    Hi everyone
    SSusan is able to save me at every farmers' market from May through November. When she arrives at the Saturday market she is full of energy and deals with people and products without stopping until the market ends---many hours later.

    Seeing Susan's improvement encouraged me to start the ampyra that had been in my closet for months. I too had an immediate boost in energy and clear thinking. I have not used ritalin (for clear hinking/energy) since I started ampyra. Thank you for being the pioneer Susan. We are among the lucky ones that it does seem to help.

    I'm going to end and see if this posts. I have not been able to use most links I have to post for quite a while. This link might work to post a response although it does not work to post a new thread. I feel muffled.
    Linda~~~~

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

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    Distinguished Community Member agate's Avatar
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    I'm going to end and see if this posts. I have not been able to use most links I have to post for quite a while. This link might work to post a response although it does not work to post a new thread. I feel muffled.
    Linda, I haven't ever heard of this problem but if you try posting about it in Forum Feedback, someone who knows about these matters will probably come along with a solution. The administration seems to be responding quickly and helpfully.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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