Hi Everyone! Well it’s been a year today since I got my brand new immune system!! I can’t even believe it.
I just returned back from a few days in Chicago determining if HSCT was successful up to this point. I’m happy to report great news! In the last 56 weeks (the previous year I was getting new brain/spinal lesions every 6 wks approximately)I have not relapsed and disease has been officially halted at year one! My cognitive testing and physical examinations have improved dramatically as have my reflexes and physical scores. My edss is now a 0 if fatigue is not considered. My vision was 20/20 which is better than it was prior. Considering the aggressive nature and the type of MS I have, this is even more exciting. As I’ve mentioned previously, my one year outlook was very grim after failing Tysabri so rapidly. Every year this continues to work is another year closer to remyelating drugs being developed that can offer me and others a chance at a complete cure for this disease.
I drilled all the doctors/nurses this week on how long this lasts and when relapses may occur etc. I was told there is a 20 percent relapse rate but most occur the first 3 years so if u can get through those, long term success beyond 5/10 years is very likely. I asked what else I can do to help get there. They said a ketogenic or Mediterranean diet has shown to be effective in conjunction with daily exercise and high doses of vitamin D. In between typing this I’m throwing away all processed foods and sugar in my house. Nothing I put in my mouth is more important than my kids having their mom around everyday in the best way possible. Also, if I do end up in the non-responders group I want to be able to show them that I did absolutely everything in my power to beat this thing.
The doctors also spoke with me extensively about paying attention equally to mental health as the constant worry of the future can weigh heavily on people in this circumstance and they find it hurts the long term prognosis. I do think I struggle with this and need to make more of an effort here.
I’ve learned a LOT in the last few years. I’m much less of a pushover after being forced to be my own advocate. At the end of the day nobody cares more about you or your family than you do so if u ever find yourself in a scary situation get many many opinions and exhaust all research efforts. Clinical trials save lives but also take them so u will never hear of them from even specialists. I also learned to not take your family for granted. Your worst day could actually end up being one of your best so don’t waste it thinking it could be better. I learned my kids/husband are stronger and more independent than I thought they were capable of and equally how much they need me in their lives. I learned who my friends are and what amazing supportive friends they are. That’s an understatement. So all in all, it stinks I will be fighting this forever but it some ways it’s more of a blessing than a loss.
I know after the first year these blogs usually end as will mine BUT because hearing about long term success is important, I will update every year after getting my updates at Northwestern.
Hope you have a nice day!!!!
Jennie's MS Journey 