The other day is not the first time I had a horrific experience with medication I have taken to slow the progression of multiple sclerosis and I am sure it will not be the last. To see my grandson smile make me want to fight to be around as long as I can for him and my family.
There comes a time when I and I alone must make difficult decisions about my healthcare. Only people who live with this unpredictable illness can no what I am going through. Living with multiple sclerosis is not a cakewalk and it is a daily struggle to stay positive and navigate your life living with MS. I am not going to lie, it is a daily fight for me, but I am thankful that I have an inner strength that picks me back up to fight and not give in to MS.
My neurologist decided I should start Betaseron as soon as possible to slow the progression of MS. I understand as a doctor why she wants me to immediately continue a treatment. At the end of the day the decision has to be mine, therefore, I told my doctor, “After my terrifying experience the other day, I do not want to take anything right now. Yes, I know MS can cause serious problems if left untreated, but I have had serious problems treating it, so what is the difference".
I have decided to go without treatment to slow the progression of multiple sclerosis for now. I AM NOT QUITTING MY FIGHT WITH MS; I need to do this for me right now. In my heart, I know that my body cannot take another terrifying episode while on treatment.
There are risks in all of the DMD's available to slow the progression of MS. I plan to go without treatment until my MRI starts showing new activity of brain lesions or if I start having too many exacerbations. I hope that I can go a long while before any new changes. When the time come for me to go back on a treatment, I believe I will try Tysabri because it is a once a month infusion instead of weekly injections. I have had all I can take from injections.
Farewell Copaxone you have been kind to me; for the last several years you did stabilized my brain lesions, but my body can no longer tolerate you.
3 comments:
QUALITY OF LIFE, really, what are we alive for? A car could hit us tomorrow. NOBODY even knows what these MS drugs will do to us long term---good or bad,THEY DON'T KNOW. Follow your heart, we at least have choices. Your boy is worth seeing his grandma happy, not stressed out over drugs.
I am glad you have made a decision you can live with and as you know, I too do not take any of the MS drugs.
However, I do take a load of supplements that fill in the blanks where my diet may fall short and I follow an exercise regimen as well.
I hope you are well for a long, long time. Best wishes, Anne
I beieve this is the right decision for me, considering my experiences on DMD's.
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