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Thread: Who here has MS?

  1. #61
    Quote Originally Posted by MSWIFE1 View Post
    Hi Snuz...I am very interested in the Vitaman D theory. We just went to a MS banquet thing the other night and they were talking alot about it and say it just makes you feel better overall. Did they give you a prescription for that amount or how are you doing it? I also find it amazing that what is suppossed to be a muscle relaxer can cause opposite effects.

    Hi,

    I got a prescription for 50,000IU One capsule a week for 3 months. I haven't felt anything yet but I don't expect to for another week or too. I'm hoping that isn't whats kicking up my spasticity. It was really bad today when I went to PT. We stretched my legs then they had me stand in a gait machine for about 15 minutes (with two people bracing me just in case my legs buckled.

    Bonnette,

    Boy was it stressful having Larry's ex-mother-in-law here!! But, it went really well and this is a woman that hated him for years! She loves us both now and I invited her to spend Xmas with Justin and Amber here this year. Who knew? Talk to you guys later. Susan
    "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

  2. #62
    Senior Member
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    Snuz, I bought David a Rifton gait trainer off of ebay, it has a seat that goes between the legs and if he gets tired he sit for a bit and then tries it again. I think exercise really helps. I don't remember there being any side effects for Vit D but I could be wrong. I think it was just an overall wellness feeling they talked about most. They have never checked Davids levels but it is on my list to have done soon. I was hoping they had a capsule, that's good to know. David has a tendacy to tighten up when ever he is nervous about trying a new exercise or piece of equipment but once he realizes its ok he relaxes some, do you think this is whats happening to an extent with you.

  3. #63
    Quote Originally Posted by Snuz View Post
    Boy was it stressful having Larry's ex-mother-in-law here!! But, it went really well and this is a woman that hated him for years! She loves us both now and I invited her to spend Xmas with Justin and Amber here this year. Who knew?
    Susan, that's fabulous! What a great turn of events!

    I doubt the Vitamin D is contributing to your spasticity...some days are just so much worse than others, for no apparent reason.

  4. #64
    I have it.

    For years now in my mid 30's. I'm on my back in bed ATM and that does suck.... A year or so ago I didn't think it would wrrive to this, but it has and it makes me nervous.

    I can't work (obviously) I go to a lot of BINGO games though!! I win often the envy all the grandmas..they ask me how I do it!.

    My dream is helping researchers help find out a cure or massive reversal method of this stupid disase calle MS.aka..I would be the test subject!! lol.

    Right now I am nervous, but I feel great when my friends take me places and they come over all the time..no one has given up on me!! I have also went camping this summer and done some kyaking.....it was awesome to do!!!!

    Bye, fornow.

  5. #65
    Senior Member
    Join Date
    Sep 2007
    Location
    Fithian, IL
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    1,967
    Welcome Construct,glad to hear such a postive attitude. That is wonderful that you have such great friends and still just keep on going. I haven't played bingo since I was little, would go with my grandma all the time. I actually started a Thanksgiving bingo during dinners at our house, family brings white elephant gifts as door prizes. Its one way to keep the gossip down during family dinners and have fun.

  6. #66
    Quote Originally Posted by MSWIFE1 View Post
    Snuz, I bought David a Rifton gait trainer off of ebay, it has a seat that goes between the legs and if he gets tired he sit for a bit and then tries it again. I think exercise really helps. I don't remember there being any side effects for Vit D but I could be wrong. I think it was just an overall wellness feeling they talked about most. They have never checked Davids levels but it is on my list to have done soon. I was hoping they had a capsule, that's good to know. David has a tendacy to tighten up when ever he is nervous about trying a new exercise or piece of equipment but once he realizes its ok he relaxes some, do you think this is whats happening to an extent with you.
    Mswife1,

    What type of gait trainer? He can walk around the house with it? I've been looking. I have to wait until we see what I can do with one in PT.
    "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

  7. #67
    Senior Member
    Join Date
    Sep 2007
    Location
    Fithian, IL
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    Snuz, its a Rifton Gait Trainer. He can't seem to get the actual stepping down pat but if he could yes he could walk around the house with it. Right now he is still just practicing standing and rebuilding muscle he can take a few steps but then gets pooped out.


    Good Luck!!!

  8. #68

    Radiation Therapy Improves Painful Condition Associated With Multiple Sclerosis

    Science Daily (Oct. 26, 2010) – Sterotactic radiation is an effective, long-term treatment for trigeminal neuralgia: a painful condition that occurs with increased frequency in patients with multiple sclerosis (MS). Radiation is noninvasive and has less negative side effects than other treatments, according to the longest follow-up in a study of its kind to be presented Oct. 31, 2010, at the 52nd Annual Meeting of the American Society for Radiation Oncology (ASTRO).

    Multiple sclerosis is a progressive neurological disease affecting about 300,000 Americans where the body's immune system attacks its own nerve cells, affecting the ability of the brain to communicate with the spinal cord. Trigeminal neuralgia is an intensely painful condition caused by dysfunction of the trigeminal nerve, which is one of the nerves that innervates the face. People living with MS see a significantly increased incidence of this problem.

    "We studied patients for a median of five years after treatment, which is the longest period of follow-up ever completed," Tejan Diwanji, lead author of the study at the University of Maryland, School of Medicine in Baltimore, said "Our study shows that radiosurgery using Gamma Knife is a proven alternative to surgery or anti-epileptic drugs."

    The study was designed to determine the long-term effectiveness of treating trigeminal neuralgia in MS patients with Gamma Knife radiosurgery.

    Read more http://www.sciencedaily.com/releases...1025133803.htm

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