I was diagnosed with MS in January of 2013. After failing Copaxone, rebif and steroid infusions I decided to look up other options. I progressed very quickly and was in a wheelchair more than I was out of it. I had horrible cramps in my legs. I had no function in my hands and I was so tired getting up to go to the bathroom was a challenge. I ran across a blog online about Dr. Burt and decided what did I have to lose.
I met Dr. Burt in October of 2014. It was at that initial meeting I was told I did not have MS but actually had Devics Disease. Devics or (NMO) is a sister diesease of MS and has many of the same characteristics. Dr. Burt informed me I was not a candidate for the study but he would do all he could to help.
In January 2014 I got a call from Dr. Burts office. I was a candidate for HSCT stem cell transplant. I started my pre-testing in February and Had my official transplant April 7th of this year. My improvement just 4 short months later is nothing short of a miracle.
Before transplant I was in a wheelchair, had no bowel or bladder function, lost use of my hands and partial eyesight in my left eye. I was on 12 medications including Baclofen -160mg Lyrica-150mg and ultram-500mg
Today I can walk, my memory is back, I have full function in my hands I take 3 pills a day to keep my immune system healthy and I am enjoying life. It is like I was never sick. At 28 years old and a mom of a 4 year old I was ready to be sent to a nursing home. Today I am in school and working part time. I chase my 4 year old like any other mommy and I am so blessed and very grateful to HSCT for healing me.
Dr. Burt and his team were amazing. This isnt a small commitment. They check on you they worry about you. You are not just another number to them. You are a person and you are treated more like a family member. I saw Dr. Burt everyday of my transplant. I hear from his office once or twice a week and I can call their personal cell phone numbers anytime. The nurses at Northwestern were on top of their game and I was looked after every minute.
The sooner you become proactive and look at all your options the better. I was met with opposition from family, from my neuro, and friends but I knew I wasn't really living life and I would have done anything to feel one day of normalcy. Now I have my whole life ahead of me. Its not to late to take that first step!
Check out my website www.wearorangeforleslee.com to see how I fundraised and to see my blog through caringbridge. It goes a little more in to detail about my journey!