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I am looking for information from others who has had MS for over thirty years. I am a care giver now to my mother who has had this for thirty years. I don't know if there is a progression of stages that will eventually happen to her. She is confined to a wheel chair and limted use of her hands. She recentally has a sesure and her mind is becoming effected, forgets, confusion, anxiety. Our family doctor said it must be the MS go to the neurologist. Is there any words of advice for me? Is there any doctor's direction to my worries?
I have had MS for well over 30 yrs. My wife who also has MS is about the same. In both our cases, it started with R & R MS (relapsing/remitting) It has progressed to Secondary Progressive MS. My wife is in a wheelchair (last 5 yrs) I am still ambulatory, with significant difficulties. We both underwent treatment with Novantrone a few years ago, and it has stopped the progression. There is one other form of MS which is called Primary Progressive. It starts with a bang in rapidly goes downhill. You need to see a good neurologist to help predict the course of her MS and prescribe the appropriate treatment. Is/has she been on any of the MS drugs (A,B,C or R) Avonex, Beta Seron, Copaxone, or Rebif? Where are you located? Check the Good Docs list to find Good Neurologist in your area. Let us know what is happening. Good luck to you, and thanks for taking such good care of your mother, that helps. Sounder & JoAnne from CLAMS
I want to know more about the meds that stop the progression.
What is the NOvantrone
You can read more about Novantrone (mitoxantrone is the generic name) on the Research page on CLAMS at http://www.clams.org/cams2.html It is a chemo therapy drug that had been used for people with painful prostrate cancer. It was approved for secondary progressive MS in February 2000. That is when my wife who has secondary progressive MS started it. I also have secondary progressive MS and began it in 2002. It is given intravenously every 3 months until you reach the maximum amount allowed based on your body weight/height. It can be heart toxic, so they do what is called a MUGGA test to determine the flow of blood thru your heart before each injection. It stopped my wife's exacerbations, which at the time were occuring about once every two months. She has not had another exacerbation since. My neuro decided not to wait for me, and put me on it too. It has had the same effect for me. I am now 63 and have had the MS since 1971 according to the VA. My wife is 61, and has been in a wheelchair for about 8 years. She is now doing PT (physical therapy) to regain some of the strength in her legs, and hoping to be able to stand soon. She probably will never walk again, but standing would be a big accomplishment. Good Luck to you, and let us know via e-mail how you are doing. Thanks Sounder and JoAnne of CLAMS