This morning I drove 2 hours east to see my neurologist the University of Michigan armed with a list of questions and concerns because I always seem to forget everything that I wanted to ask at the end of my appointments when they ask if I have any questions. I can’t be alone in that, right?
This was a routine neurology appointment that included walking down the hall as fast as I could, hopping on one foot for 10 hops, touching my nose and then touching the doctors finger….you know, all of the usual neurology exams. I passed with flying colors, as usual 😉
My neurologist set my mind at ease about some of the symptoms I was experiencing that most likely had absolutely nothing to do with MS and she assured me that it is normal to experience anxiety when living with an autoimmune disease and especially after going through a treatment like I did. She said that if it gets worse or seems to interfere with my everyday life to contact her or my general practitioner right away. To help in the meantime, she gave me orders for my MRI to get done within the next 4 weeks so that way I can see that there aren’t any new lesions on my brain or spine.
We talked about all of my questions and she nonchalantly mentioned how she’s going to be giving a talk to residents and physicians soon about a popular disease modifying drug (dmd) that many MS patients are on called Lemtrada and she said that she’s going to also start talking about stem cells. I told her I thought that was great since my old neurologist close to home (who happens to be one of the top MS specialists in my state) is completely against HSCT and anything that isn’t the FDA approved DMDs and how he once told me “if it seems too good to be true, it probably is” before he walked out of my exam room. This mindset is toxic, in my opinion, and is not doing any patients any good as they research how to best live with a lifelong degenerative disease.
As she was walking me out to schedule my next appointment she asked me if I would be willing to come to one of her talks so I could tell the residents and physicians about my story because she said I am a perfect example of how this stem cell treatment can work. ARE YOU KIDDING ME?!?!?! I about hugged her in the middle of the office! This is my dream come true!! I can tell person after person about how HSCT gave me a new lease on life and how beneficial it can be to those who are suffering from so many different autoimmune diseases, but if those people can’t find any health professional who will even entertain the idea, then that is where their research usually ends.
I am only one person with my own personal perspective on this disease and the treatment that I sought against my original neurologist’s blessing. But maybe this is what it will take to shine a little light on what can be done and what is possible to not just slow disease progression, but to halt it. I am so excited to tell my story and to talk about how undergoing chemotherapy to wipe out my immune system and then receiving my own stem cells back to help regenerate a fresh new immune system shouldn’t be something that we have to seek out in another country. I need to make it clear that the miracle isn’t in the stem cells, it is in the chemotherapy. As my fellow HSCT warriors will tell you: no chemo, no cure. Stem cells alone do nothing for autoimmune diseases but they play an important role in the recovery and rebuilding of a healthy immune system.
I have a little light, and I’m going to let it shine so bright!!! My hope is that my one little light will ignite more and more lights until HSCT for autoimmune diseases is something that can be as easily obtained as the other drugs offered to patients.
Adios, MS! 
You are a rock star!!! All big huge world covering light (like the sun) started with a tiny light. You are it!!!!
LikeLike