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Old 04-20-2007, 07:56 PM
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Cherie Cherie is offline
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Join Date: Aug 2006
Location: Northeast US
Posts: 305
15 yr Member
Cherie Cherie is offline
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Cherie's Avatar
 
Join Date: Aug 2006
Location: Northeast US
Posts: 305
15 yr Member
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Nancy,
I was diagnosed in 1994 after nearly 20 years of off and on symptoms. Because I was in my 40s and still working ansd walking unassisted, I was told it was benign and very mild and I would probably never get much worse. By 2001 I was no longer walking on my own for more than a few feet and had lost most of my vision.

My neuro started me on high dose IV steroids and when I saw an improvement, started me on Avonex with monthly pulse dosing of IV soulmedrol. I was on that regimen for nearly two years. Initially I saw some improvement but after a year, the decline started again. Mostly, I had awful side effects from the steroids and tolerated the Avonex well. In May of 2003 I started on Rebif and went off the steroids three months later. My husband was the first to really notice the improvement.

By six months into the higher dosing of this med, I was walking unassisted, had my vision back sufficiently to drive again after two years of not, and no longer needed to cath to empty my bladder. That improvement has maintained and, if anything, I continue to improve. I am probably more fit than at any time in the past 25-30 years.

I have changed my eating habits and eat far fewer carbs (almost no breads or pastas) , eat fewer fats and more protein. Lots of water helps bladder functioning. The only supplements I take are fish oil prescribed by my PCP for heart health and milk thistle to keep liver enzymes in normal range (the interferons tended to elevate them). I also exercise 20-30 minutes daily in the water and am walking a couple of miles 2-3 times a week.

I now I'm not cured but this may be as close as I will see in my lifetime and I'm content to stay the course till something better comes along.

Do talk with your doc about the options available. General thinking is that you are fighting odds of worsening if you're not on something to slow progression. Something. Anything. I don't recommend one over another. Just know what has worked for me.
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