My story probably resembles many of your own. I was moving along in my 30’s, happily married, raising three daughters, healthy and exercising regularly.

The first symptom of MS that I experienced was numbness and tingling in my right cheek. My husband suggested making an appointment with our family physician as soon as possible just in case I was having a mild stroke. This first visit led to a 4-6 year flood of tests and on and off symptoms that finally culminated into a diagnosis of Multiple Sclerosis. At the time, there were only two or three treatment options. I immediately started on Copaxone (a daily injection with no flu like side effects), followed by Rebif (a 3x’s a week injection with flu like side effects). After four years, much bruising and little to no improvement I made the decision to change doctors, ending up in a clinical trial at UCH Denver for Alumtuzimab. On the day of final applicants I received a phone call stating that the protocol had changed and I was being placed in the Rebif group. I was devastated, as I had hoped to be placed in the experimental drug group. Later that day Dr. Timothy Volmer called me personally and suggested I make an appointment to see him and start on Tysabri (a once monthly infused drug) immediately. After four years, with pretty good success, I tested positive for the JC Virus which can lead to PML, a brain infection that causes severe disability or death. Running out of options, Dr. Volmer put me on Tecfidara (one of the first oral treatments). Once again, the side effects were too much for me to handle. My next and last option was Rituximab (a twice yearly infusion approved for Non-Hodgkin Lymphoma, but was showing positive results in MS patients). This drug finally halted my progression of MS lesions in my brain and c-spine with no side effects. I received this drug for about 4 years until I reached age 62. 

With another new doctor (after Dr. Volmer retired), 

we decided to halt any drug for MS, as it has been suggested that by the time we reach our 60’s, the inflammation halts. I will do MRI’s regularly to confirm that I have no more progression of symptoms. 

So far so good!

In my next post I will explain how MS relapses resulted in the disability that I experience today.