After experiencing bouts of numbness in my legs while vacationing in Las Vegas in 1995, I knew something was wrong and made an appointment to see my doctor. Referred to a neurologist, I underwent a MRI and spinal tap. The result was a diagnosis in May of 1995 of Multiple Sclerosis.
My original treatment to keep the symptoms at bay was once a month iv drips of Solumedrol in my neurologist’s office or at home with a visiting nurse. I relied on this medicine to stay in remission. With each exacerbation, or falling out of remission, I was admitted into the hospital for treatment of a Solumedrol iv drip that would last three to five days. This occurred in June of 1995, July of 1996, September of 2000 and May of 2001, for a total of 18 days hospitalized.
As my MS progressed, weekly Avonex injections were added to my routine. I administered these injections each Friday in my thigh. Avonex side effects were flu like symptoms that would begin after about six hours and would last all weekend. This medication changed my personality making me irritable at best. Despite the routine, exacerbations continued and my quality of life continued to deteriorate.
With each relapse, greater doses of Solumedrol were needed to bring me back into remission. My body was becoming immune to the medications I needed to be healthy. The side effects of this medication included weight gain, bloating, redness, mood swings, and changes in personality. One of my last exacerbations was a bout with Bell’s Palsy and my optic nerve muscle was impacted. I was experiencing blurred vision to the point that I could no longer see to perform daily tasks.
Hospitalized again, with treatment taking longer to bring me back into remission, I questioned my doctor to see if I was in fact becoming immune to the medications. His explanation was that the optic nerve was a small muscle and the medication just took longer to reach that particular area. I wasn’t satisfied with that response and inquired about experimental stem cell research that I had heard about on the news.
After several referrals, in 2001, I ended up in the office of Dr. Richard Burt at Northwestern Memorial Hospital in Chicago. I did not fit the FDA protocol for Dr. Burt’s stem cell study at that time. The FDA criteria required patients that were handicapped. However, Dr. Burt stated that if I could maintain my health status I would be his first patient when the next protocol was approved by the FDA.
Ten months later, Dr. Burt called with the news that the FDA protocol was approved and that I needed to come back to Chicago to be reevaluated. After examination, I was accepted into the study in 2003. In May of that year I traveled back to Chicago so I could begin the stem cell harvesting and transplant process.
On July 1, 2003 I received my adult stem cell transplant. I was released from the hospital but stayed in the Chicago area for monitoring until August. Once back home, local doctors continued monitoring my blood count and communicated those results back to Dr. Burt in Chicago.
After four months devoted to my transplant and recovery, I went back to work symptom free in September of 2003. Part of a five year study, I follow up yearly with Dr. Burt. July of this year will mark my five year post transplant anniversary and I will celebrate five years of being free of any symptoms of Multiple Sclerosis. I look forward to continuing to live an active, productive MS-free lifestyle that includes my work as well as playing racquetball, golf and coaching hockey.