Artrell Mason and I began chatting on twitter recently. She posted about how she came to my hometown, Chicago, to see if she was a candidate for a stem cell treatment. She recently moved to a small town in Arkansas for the weather. When dealing with multiple sclerosis, the artic cold, snowy and icy winters of Wisconsin made travel and commuting difficult during those few months.
Many ask about the process to begin stem cell treatment, I thought Artrell’s story of not being accepted is interesting and one that many might experience and not share.
When were you diagnosed with MS?
“I was diagnosed with MS in 2007.”
What were your first symptoms?
“My symptoms started years before without me knowing. My legs would feel like they were falling asleep anytime I took the stairs at work. My doctor thought I pinched a nerve. Then, one day, I went blind in my right eye. My optometrist examined me and said “Worst case scenario you’ve got a tumor behind your eye that I can’t see. However, I’m willing to bet you have multiple sclerosis.” He wanted me to go to an opthamologist. Instead I went back to my doctor and showed her what he said. She sent me immediately for an MRI and there was confirmation with the lesions.”
What current treatments (medication and natural therapies) to you use for your multiple sclerosis?
“At the moment, I take Tecfidera.”
When did you learn about Hematopoietic Stem Cell Transplantation (HSCT)? (For those that don’t know; HSCT involves the intravenous infusion of autologous or allogeneic stem cells to reestablish hematopoietic function in patients whose bone marrow or immune system is damaged or defective.)
“I learned about stem cells just from researching and reading medical magazines. It seemed to be a promising treatment. Besides my mother had an “incurable” cancer and went through a similar treatment and is now cancer free.”
Why did you choose Northwestern Memorial Hospital in Chicago for your consultation?
“I chose Northwestern because it was close to my hometown and I’m familiar with the Chicago area.”
What was the process like to get the appointment and what happened at the appointment?
“The process to get the appointment was fairly easy. After an initial questionnaire, they send an informational packet that needs to be completed and you need to provide copies of your medical records. Once all your information is received, they call to schedule your appointment consisting of an MRI, labs and two doctor appointments with two different specialists.
My experience was not a good one and not just because I was not accepted. My first appointment was rescheduled and therefore out of sequence. Patients generally have one day for the labs and MRI and the next day for the doctor appointments. I had one doctor appointment before my MRI and labs and it felt extremely rushed. The appointment only lasted 20 minutes.”
Why did they say you are not a candidate for HSCT?
“Near the end of that time, I was told that my doctor believed I was secondary progressive and they don’t take secondary progressive patients in the program. Again, this was before my MRI and labs had even been taken!
My second appointment was the following day and was a much calmer non-rushed appointment, with a different doctor, and much more thorough. I returned home and received a phone call about a week later restating that they felt I had SPMS and would not be a candidate. I wanted to argue the point that he came to that conclusion before even seeing my MRI or lab work. However, I inclined myself to take this news with a grain of salt. It’s their program if I don’t qualify I don’t qualify. The silver lining was that all the support staff at Northwestern was AWESOME!
What are next steps for you?
“Now I just keep doing me. Keep doing what I can do to keep pushing forward. Seeking the next great hope to cure this thing. Staying as positive as I can and keeping a great group of supportive people around me. I’m not giving up on ME yet!”
Thank you, Artrell for sharing your story. I hope you are enjoying winter in a warmer climate.