On Monday I find out if HSCT has successfully stopped my multiple sclerosis.
This will be the first MRI that I've done since my treatment a year ago. Around 15% of patients with relapsing-remitting multiple sclerosis will have a relapse after HSCT. I don't have any new symptoms, so the odds are good the test results will be positive.
I'm still recovering, but it's become almost surreal how much my health has improved from where I was a couple of years ago. Fingers crossed everything checks out alright on Monday!
Oct 14, 2017
1 year later!
A year ago today, after four days of chemotherapy, I had my stem cell transplant. Even though I was officially diagnosed with MS only a little more than two years ago, I was sick a long time. Out of control lesions all over my face, massive gut inflammation that made me barely able to eat, and severe autonomic dysfunction that got so bad that it made it difficult or even impossible to stand or walk for a year. While recovering from that, I tested positive for lupus and was diagnosed with aggressive multiple sclerosis that was quickly taking my eyesight and would have likely confined me to a walker or wheelchair by now had I not got this treatment. Everything autoimmune, and all born out of the same "bad soup".
And today, looking back, this all feels like it happened to another person. That's not to say that I've completely recovered. My body can be unpredictable sometimes, but the difference is night and day. I can walk, I can run, no more lesions on my face, no more gut problems, I no longer experience crippling fatigue and brain fog, and my eyes have healed. I spent more than half a decade just trying to survive, and now after HSCT, my day is finally not consumed with illness. I'm able to think about my future. I have my life back.
I'm one of the lucky ones. As bad as it was, it could have been so much worse. My dad has been completely paralyzed from the chest down for nine years due to autoimmune disease (MS/NMO). This summer he was diagnosed with stage 4 lymphoma. His cancer was directly caused by the medication his doctor has had him on the last nine years, azathioprine. Because of his paralysis, he's not able to do the chemotherapy he needs to treat his cancer. He has been getting monthly infusions of rituximab, which will hopefully help slow it down.
Had he gotten the same treatment I did a year ago when his problems first started, he would, in all likelihood, be walking today. HSCT was around back then but deemed too dangerous by the medical establishment. Ironically, the same chemotherapy drugs that are used for HSCT, cyclophosphamide, and rituximab, are what he needs today to treat his cancer, but is unable to receive because of the progression of his autoimmune disease. It feels like I won the lottery, while he and so many others have lost.
Millions of people suffer from autoimmune diseases that can be stopped with HSCT, and only a relative handful have been able to be treated. Please help spread the word. On the 22nd of this month, I am flying back to Moscow for my one-year follow-up MRI. Dr. Fedorenko will compare the results to the MRI I got before HSCT to make sure there is no new disease activity and also to see if my body has been able to repair any of the old damage. I will keep all of you updated on how it goes!
I really want to thank you all again for helping make my treatment possible. It has completely changed my life, and it would not have happened without your support!
Aug 29, 2016
My treatment date has changed! The hospital was nice enough to swap my date with a local patient who was scheduled for later in September. This means there is a little more time to get the money...
Aug 25, 2016
My dad and I were interviewed by my hometown newspaper in Florida.
It's been 12 days since I got out of the hospital after my last MS attack. Unfortunately, my symptoms seem to be coming back....
Aug 23, 2016
Aug 18, 2016
I'm scheduled for treatment on September 6th. We have 19 days to reach the goal. Thank you for your generosity, everyone. This would not be possible without your support.
Aug 14, 2016
I had another MS attack last week. One of the most severe attacks I've had, and I've spent the last few days in the hospital. I lost a lot of strength in my left leg and was about to need a walking...
Aug 05, 2016
People have been asking why the fundraising total has not increased. It's because HelpHOPELive updates the total once a day (Monday - Friday) at the end of business, US time. Your donations are...
Aug 04, 2016
Aug 04, 2016
I'm sorry I haven't updated in a while. My health has really been a mess lately. I was down to 40% vision in my right eye a few weeks ago. It's improving now after more steroids. I've also been...
Jul 27, 2016
Thank you, everyone! I really appreciate your support! A few people have asked whether this is an "all or nothing" campaign. It's not! Even if the goal is not reached, the money raised will still...
Jul 27, 2016
HSCT is the single most effective treatment for multiple sclerosis. It works by literally wiping and rebooting your immune system. Thousands of MS patients from all over the world have been cured...