b"Life with MSMMyyMMSSJJoouurrnneeyyDDooyyoouurrrreesseeaarrcchh,,ccoonnssiiddeerrtthheepprroossaannddccoonnss,,aannddbbeerreeaalliissttiiccBy Jodi Koehn-PikeAs you all know, getting a diagnosis of MSIt wasniceknowingthere wassomeoneI is not an easy thing. Sadly, theres not a simplecould talk to who understood the disease. In blood test that, if positive, indicates you havethis trial, I would need to visit NIH monthly MS. When my legs rst went numb, it was duringfor bloodwork, several physical and cognitive a blizzard, and I thought I hurt somethingtests, and an MRI; give myself an injection while shoveling. When it came back a fewtwice a day; and get a lumbar puncture at the months lateralong with some tingling instart of the trial and then again at the end. my handsI gured I should get it checkedMy journey in clinical trialsout. My doctor started by testing me for everySince1996,Ihaveparticipatedinfour possible vitamin deciency, followed by an X- clinical trials and am now in a long-term ray, MRI, electromyography, and a lumbarprotocol with a yearly visit.puncture.When I got my diagnosis back in 1996, itFor each trial, extensive protocol paperwork was a shock. I didnt know anything about thegoes into crucial details about what theyre disease and was all on my own. I remembertesting and all the possible risks. Researchers when I told my supervisor at the time, I laterat the trial center take a patient-centered overheard him saying something to the effectapproach and only suggest participation in a of shes going to die. trial if they think it will help you.No kidding. We all are. Since my rst trial participation, I was in a I live in the Washington, D.C., area and wastrial for an immunosuppressant that already fortunate that a few weeks later, my neurologisthad FDA approval for kidney transplants, referred me to the neuroimmunology divisionrequiring a monthly infusion. The trial's results of the National Institutes of Health that workswere so good that my insurance company on MS. After going through some additionalagreed to pay for it after the trial ended. I testing to make sure I qualiedmeaning thatconsidered it a miracle drug. Unlike other MS I had the diseaseI was invited to participatedrugs I tried, there were no side effects and no in a clinical trial that would last a few years. more heat sensitivity.Participating in a clinical trial isnt the rightWhen the manufacturer stopped making option for everyone, but it was an easy decisionthe drug because there were better and cheaper for me. It was hard to get an appointmenttransplantdrugs,anotherpharmaceutical with my outside neurologist then, but at NIHcompany stepped up to create a subcutaneous I saw a neurologist once a monthand oneversion of the drug. I was the rst patient NIH who specialized in MS. My family was halfwayrecruited for the protocol to test it, and I stayed across the country, so I felt somewhat alone.on it until it got FDA approvaland beyond. msfocusmagazine.org 8"