Again

Again

I know I must sound like a broken record but here goes. I truly and highly recommend HSCT treatment for your MS. I went for my MRI a month early because I had to travel to Daytona Beach, Florida for my sons college graduation. The MRI showed no active or new lessons. The ones that were there were smaller in size. A lot of symptoms have gotten a lot better. Yesterday I was able to hang out all day on the beach with no heat issues at all. I know it's not easy to get. Most have to travel to have it done. Either you have the funds to do it or like me you have to fundraise for the cost. There are a lot of people who would like to see you get better. Some might say they are fine and they might be, but it not a progressive disease for nothing. It can and will change at the drop of a dime. Unfortunately the final chapter is all the same. One decides if they can smile or not during that stage.

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  • Lovely photo. One you can cherish forever, blessings Jimeka 🌈 🦋 🎓

  • RiskyRich, it is not a broken record to be so passionate about a topic that has helped you and you hope others can also be helped from. The reminders are always good because the stem cell transplant is getting closer and closer to being approved in the US. Thanks for being so active again in our chat room. The family missed you. We sincerely do have much to learn from each other. As I always say together we are not only stronger we are smarter! Fancy1959.

  • Hello 1RiskyRich what exactly is HSCT and how is it administered? I suppose I could search the Internet but I'd like to hear your take since you've had it done. Is it only for progressive forms of MS? I have RRMS and have been relapse-free since starting Tecfidera a few years ago but I'm always interested in what is coming next. I understand your perspective about who is making money off us and why there may not be a real push for a cure. I've had lots of challenges getting my med covered by insurance - the most helpful people are the big pharmaceutical company because they want to keep me on the med so they make money over time even if they have to help cover my deductible. I am thankful for them in that way- but it would be great to just find a cure or more "permanent" treatment for this. My case is mild right now but we never know what tomorrow holds.

  • Sorry for the late response. Finally got back home and saw this. HSCT is a reboot of your immune system. The cells for your immune system is built/made by your stem cells. After testing to see if you can withstand the treatment, your stem cells are harvested and your immune system is totally wiped out with chemo. In my case it was 4 days of chemo. You are then given your stem cells back. They will do their job and create more cells that will later become your new immune with no memory whatsoever of MS. That's the procedure in a nut shell. My immune system took almost 10 months to come back to normal. Some come back quicker & some take more time. As long as your CBC (complete blood count) are all in the normal range you are good.

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