Wednesday, June 15, 2016

I'm in a Clinical Trial!!

It has been a long time since I did an update here. There were a few reasons why I stopped. My health got worse and it was physically challenging to do. Sometimes I wanted to write but didn't know how to keep things positive so just didn't say anything. I also let the haters get to me. There have been people who have accused me of faking my MS for attention. That has been a hard reality to face but I'm going to try to update more frequently and not let the haters get to me.

Quite a bit has happened since I last posted, I had to switch medications to Tecfidera because the Gileyna was causing me heart issues and it wasn't as effective as we wanted it to be. I was on Tecfidera for about two years before we started looking for another treatment option. I was still having flare ups every few months and the side effects were bothering me daily. It bothered my stomach and it caused severe flushing, it was super fun when the neighbor kids were afraid of me and said I looked like a monster. Turns out I have more energy now that I'm not taking Benadryl ever six hours, go figure. The main reason I finally stopped the Tecfidera is because I was accepted into a promising clinical trial.

Dr Burt at Northwestern in Chicago is doing a stage 3 study using a combination of your own stem cells and chemo to restart the immune system. He treats several autoimmune conditions with it and it has proven to be safe. This trial is comparing the efficiency of the treatment versus standard MS disease modifying therapies. Dr Burt will be treating me this summer with an Autologous Hematopoietic Stem Cell Transplant this summer to control my MS. What this means is that I will be receiving a transplant of my own stem cells after undergoing chemo. It is the same type of procedure that cancer patients receive but with the hope that when my immune system is wiped out that my immune system "forgets" that I had MS. 

Even better news, insurance has agreed to cover most of the costs of the treatment. Without insurance the price tag can be $150k or so. There are other facilities around the world performing similar procedures for less but insurance doesn't cover them and it is still +$40k, also known as more money than we can afford, so I quite grateful insurance is covering. I was also quite fortunate in that I didn't have to deal with any appeals and my neurologist supports this course of treatment, unfortunately a lot of patients have to deal with those obstacles but apparently our new insurance company and the doctors agree that I have a more aggressive form of MS and need a stronger treatment option. Hooray for insurance/doctor support but :( that that is the way my MS is working out. It has always been easy for me to help others, it is something that I love to do, but it is really difficult for me to ask for help but I’m asking now. Please support me as I undergo this life changing procedure. We are fundraising to help offset the costs that insurance will not cover. To make a tax eligible donation please visit All donations will be going to my treatment costs. This website will be used in addition to my blog for treatment updates. 

I could also use your thoughts and prayers going through this procedure. I will be updating this blog more frequently and hope you will continue reading. 

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