At Least Moderate
Having had aggressive relapsing-remitting Multiple Sclerosis since I was at least 23, I have seen some of the best neurologists in New York, Maryland, and Connecticut. I've been written about and treated unusually with chemotherapy initially and then combination therapy. I self-administered MS injections and took immunosuppressants for years, to keep me in remission. I presented so suddenly, having no idea what year it was, where or who I was. At 28 I was collecting disability and only became aware of my cognitive challenges after being fired. Currently I have had over 30 brain MRIs.
A year and a half ago I was in and out of nursing homes, hospitals, and rehab facilities. Nothing was helping my constant pain, numbness, clonus, severe leg spasticity, confusion, and spasms. I could not walk and it was expected I'd be going home in a wheelchair. While I was in and out of nursing facilities, my partner (who is also a scientist) was searching worldwide for information about stem cell transplants. We had heard success stories from others with MS but none of my doctors suggested this. Upon questioning them, they all said the opportunity to be treated with my stem cells was so far down the road.
Flying to Chicago to see Dr. Burt at Northwestern Memorial has changed our life profoundly. I was initially evaluated in February 2013 and admitted for an autolgous hematopoletic stem cell transplant (HSCT) in May. My initial visit was to determine if I would qualify for Dr. Burt's current study. I did not qualify and was treated off study. It had been less than a year since my last MRI and I had developed 18 new enhancing brain lesions and 4 spinal lesions so my MS was still relapsing remitting. I remember the neurologist at Northwestern looking at my MRI and just shaking his head. I had been seriously undertreated.
While the Northwestern team could not promise me anything, Dr. Burt thought he could help me. Before choosing him, I had read about other patients who went to him for HSCT to halt, maybe reverse, their MS, Lupus, Schleroderma, Chron's Disease, Devic's, or other AutoImmune Diseases. I watched videos of some of his success stories though I wasn't getting my hopes up too high. Still, the next step was clear. I was in a position where I only had something to gain. I was losing function daily and all the other medical professionals I had been seeing were saying “This is MS, deal with it.”
My own stem cells were harvested for the transplant. For six hours I had a catheter in my neck and 14 million stem cells were collected. I then received high doses of Cytoxan, the same chemotherapy I was on in 2001 for nine months when initially diagnosed with MS. The amount of Cytoxan for the stem cell mobilization was significantly higher than in 2001. I lost all my hair and needed a blood transplant, but would do it all again in a heartbeat. Everyone on the floor I was on at Northwestern Memorial was on chemotherapy so there was no interaction with anyone but doctors and nurses, wearing face masks and gloves.
The day of the transplant was May 13th, my second birthday. The doctors, nurses, my partner and the chaplan were all there. My stem cells was taken out of a freezer, put in a water bath and then attached to my IV pole. The infusion took a mere thirty minutes.
Before I even left Northwestern I was in no pain, stronger, able to ambulate longer distances using my walker and my balance had improved. From Chicago I was admitted to a skilled nursing facility in Massachusetts for acute rehabilitation for physical and occupational therapy. Then I spent several months with my mother in New York following all instructions for patients 3-6 months post transplant, which included frequent bloodwork, staying away from crowds, and constant handwashing. When she was at work I would do my PT homework and make my bed, something I hadn't been able to do for a year.
My MRIs will always show scars and black holes. Every day I am amazed I can remember my address, get out of bed by myself, walk up and down the stairs. Now I appreciate and accept my brain, my legs, and hands more than I ever did. In my discharge summary the pre-transplant testing reports says under impression “at least moderate disease burden related to multiple sclerosis.” Moderate. I understand moderate to mean average. Nothing is average about having this amazing procedure done, the way I lost myself and then got my life back. Nothing is average about how my MS presents itself or the dogged persistence of my partner. Nothing is average about Dr. Burt, his team at Northwestern or any of the patients who have had an anautolgous hematopoletic stem cell transplant.
Does your employer provide workplace accommodations due to your MS?