Why Chemo
I keep being asked why I am on chemo and why I am not on MS pill or treatments so I am going to put it here it may help me to get my feeling out about what is going to happen.
Why I choose chemo
I have a very agressive case of MS I was having attaches every couple months, without treatment I would already be living on a ventilater being paralized from top of chest down. Not able to feed myself or anything else. Not even to scratch on own nose or wipe my own A**. Would not be able to hold a book or turn a page living for the rest of my life here in a long term hospital never to live again with my husband.
I last nov one yr ago my legs went numb 2 weeks later I was paralised. Went in hospital, after lots of tests was told I have MS (note I have had ms since 17 yrs old at that point 23 yrs they last 8 yrs spms) I was give high dose steriods five days afterwards I was walking for short periods. I was weak and told that I had lost muscle mass in the time I could not move. So I was sent here for rehab.
Jan for 3 weeks rehab. I got to walk up to 500 M(1500 F) I got stronger but I got tired and went into a ms attach after 2 weeks got a new lession in my vision center. I was sent home. I was ok for awhile.
In march I lost feeling again and was paralised once again went back to hospital and they admitted me to give high dose steriods for 3 days and was sent home. I was ok for awhile.
In the end of april I started to get worse once again. Saw the MS doc and was give 500 mg twice day of steriods for three days. It helped but it was not working for long enough. it was not working for the whole 4 weeks. In between apointments I got worse the paralisis went up my chest I was admitted in hospital. It was the first time I was told that I could stop breathing. So once again the steriods, when they would not hold me for the whole 4 weeks I was told of mitroxantrone.
Mitroxantrone is a type of chemo it is not as toxic as others and they give one dose every three months. They are using the sideffect of low white cell counts as a treatment. They do not want to wipe them out completely just lower them so there wont be enough of them to attach my nerves.
There are studies done and they show that the MS is slowed down and attaches are stopped or lessened. Also the lessions are smaller. It does take months and months for it to work. I will get 4 doses in one yr, and we will deside if I should continu on for 2 to 2.5 yrs.
They give high dose steriods once monthly to keep most of your function. During that time I want to rehab slowly. Get all of the strength I can. If I get enough funtion I can go home and live with my Husband. Having a bit of our life together back. If I can get to the point of walking 40 M then I can go on one of the MS drugs there is one that shows great results after chemo extending the rusults you got from the chemo.
I know I will end up back paralised from chest down and needing a vent but it should put it off for 2-5 years or may be longer. During that time I can live a fairly normal life. A vacation from the illness if you will.
Knowing how bad I was and how fast I was going to need a vent. I want the time I can have living my life.
that is why I choose to take chemo which for now is the treatment I am on for my MS
Why I choose chemo
I have a very agressive case of MS I was having attaches every couple months, without treatment I would already be living on a ventilater being paralized from top of chest down. Not able to feed myself or anything else. Not even to scratch on own nose or wipe my own A**. Would not be able to hold a book or turn a page living for the rest of my life here in a long term hospital never to live again with my husband.
I last nov one yr ago my legs went numb 2 weeks later I was paralised. Went in hospital, after lots of tests was told I have MS (note I have had ms since 17 yrs old at that point 23 yrs they last 8 yrs spms) I was give high dose steriods five days afterwards I was walking for short periods. I was weak and told that I had lost muscle mass in the time I could not move. So I was sent here for rehab.
Jan for 3 weeks rehab. I got to walk up to 500 M(1500 F) I got stronger but I got tired and went into a ms attach after 2 weeks got a new lession in my vision center. I was sent home. I was ok for awhile.
In march I lost feeling again and was paralised once again went back to hospital and they admitted me to give high dose steriods for 3 days and was sent home. I was ok for awhile.
In the end of april I started to get worse once again. Saw the MS doc and was give 500 mg twice day of steriods for three days. It helped but it was not working for long enough. it was not working for the whole 4 weeks. In between apointments I got worse the paralisis went up my chest I was admitted in hospital. It was the first time I was told that I could stop breathing. So once again the steriods, when they would not hold me for the whole 4 weeks I was told of mitroxantrone.
Mitroxantrone is a type of chemo it is not as toxic as others and they give one dose every three months. They are using the sideffect of low white cell counts as a treatment. They do not want to wipe them out completely just lower them so there wont be enough of them to attach my nerves.
There are studies done and they show that the MS is slowed down and attaches are stopped or lessened. Also the lessions are smaller. It does take months and months for it to work. I will get 4 doses in one yr, and we will deside if I should continu on for 2 to 2.5 yrs.
They give high dose steriods once monthly to keep most of your function. During that time I want to rehab slowly. Get all of the strength I can. If I get enough funtion I can go home and live with my Husband. Having a bit of our life together back. If I can get to the point of walking 40 M then I can go on one of the MS drugs there is one that shows great results after chemo extending the rusults you got from the chemo.
I know I will end up back paralised from chest down and needing a vent but it should put it off for 2-5 years or may be longer. During that time I can live a fairly normal life. A vacation from the illness if you will.
Knowing how bad I was and how fast I was going to need a vent. I want the time I can have living my life.
that is why I choose to take chemo which for now is the treatment I am on for my MS
Replies
good on ya kayce, sounds like you are getting this thing under control. I believe with the great advances they are making in therapies this will be more than a break in your health but quite possibly for good.
wishing you continued success!
thanks girl for telling me why you are choosy the right thing to do so your ms will be under control you will make this happen you are a strong lady and positive too .my prays go out to you and god will make this happen for you in his name amen the mind can heal your body and the love of hubby you will be home soon just get better love ya april
With this disease, it seems like we are puppets so much of the time, doing the bidding of the MS puppet master. But you have taken back control. Keep fighting! We love you. Gentle hugs.