So now that I had decided that HSCT was the way to go, I had to figure out how to get into the trial…
Step 1: I went to the http://www.beat-ms.org/
I checked the Eligibility criteria to see if I qualify.
Age 18-55 (I am 37) 👍
Diagnosed with relapsing MS(yup in 2011) 👍
Incomplete benefit from prescription meds (Tried Tysabri and ocrevus) 👍
Able to walk 100 yards (without cane) (Barely) 👍
Step 2 Now where do I go to have this done?
The Beat-MS site lists the multiple study locations. The ones that are currently enrolling patients have an email of the coordinator.
Cleveland Clinic was the closest location to me. So I collected all my records, scanned them in, and sent them over to the research coordinator. To my dismay, they found the one sentence in my records from 2 years ago that would make me not qualify for the study. But I can’t blame them, they don’t know me at all. To them I’m just a piece of paper with a bunch of medical jargon.
Step 3 Don’t take NO for an answer.
I would have given up after being told “No”, but my husband pushed me to try all our options. So I decided to take a little trip. I went to see my neurologist(Dr. Robert Bermel) from Cleveland clinic. I have been his patient since 2014. When he saw how much I had declined, he knew something had to be done. He gave me the option of being part of the BEAT-MS trial or receive hsct off label. This way I could ensure that I would get stem cell therapy. Dr. Bermel spoke to his colleague, Dr. Jeffrey Cohen, and the bone marrow transplant doctor, Dr. Navneet Majhail. And together they all made this possible! 😀