May 26, 1995

I remember almost every detail about the day I was diagnosed with multiple sclerosis. It was the day after my 23rd birthday and the Friday before the Memorial Day holiday weekend. My younger brother, Ryan, would be graduating from high school the following day, so I would be heading up to my parent’s house in Los Angeles from my apartment in San Diego later that day, after my appointment with the neurologist. Dr. Silver was still fairly unfamiliar to me as I had only met him a few months before, when my primary care doctor referred me to him to figure out why my pinky finger, then the rest of my hand, became numb. I liked Dr. Silver immediately because he was very kind and positive.
My nerve conduction test was normal, so he sent me on my way after that first appointment with these instructions: If any numbness returns, come in IMMEDIATELY.

He obviously had a doctor’s intuition, because I ended up back in his office two months later, this time with numb legs and definitely more freaked out. He scheduled MRIs of my brain and spine to determine the cause of my numbness, which resolved in two weeks much like the numbness in my hand. He told me to finish the teaching credential I was almost done with and to try to relax until we had an answer. Easy for him to say.

When he delivered the life-changing news that gloomy May day, I was sitting with my mom in his office waiting for him to tell me that, yes, it was only a pinched nerve that caused the numbness. Unfortunately, it was much more than that. Multiple sclerosis. MS. Even better? I needed to have a spinal tap that day to confirm what the MRIs had told him. Once that nightmare was over, I made an appointment to discuss my limited treatment options. Back then, there was only one medication.

My mom and I drove to Los Angeles in stunned near-silence, with me reclining to protect myself from the spinal tap headache. How could I have MS? I just climbed stairs this morning for 30 minutes on the Stairmaster, for God’s sake!

Fast forward to May 25, 2018. I turn 46 today. As of tomorrow, I will have had MS officially for half of my life.

Here is what I know about MS now that I didn’t 23 years ago:

• Some medications will work better for you than others. When I was diagnosed, there was one FDA approved medication. Now there are more than 10. Progress takes time.
• Life isn’t fair. If life were fair, I would not have to deal with a zit or cramps while also managing MS. If life were fair, Dana Reeve would not have died of lung cancer just two years after her husband, Christopher Reeve, just two years after her husband, leaving their teenage son without a living parent.
• Doctors know a lot, but not everything. Find an MS specialist to handle your care if at all possible. A specialist will be far more informed about all current and developing treatments. If you are unable to or if your insurance does not cover it, ask your neurologist how many MS patients he or she treats and choose a doctor who is most knowledgeable about your disease. If you can, I would highly recommend at least consulting with a specialist once a year (if you can pay out of pocket) so that you can get a more in-depth evaluation. It is even better if your doctors are proactive with your treatment instead of taking a “wait and see” attitude. I firmly believe that Dr. Silver, my first neurologist, delayed any MS damage I would develop by insisting I start taking Betaseron, the fairly newly approved first treatment for MS, right after I was diagnosed. Many doctors were wary of prescribing Betaseron because of its side effects, but I would probably be in a very different place if I did not take it.
• Not every medical problem you have is due to MS. Sometimes other annoying things pop up, like kidney stones or even a paper cut, unless you got the paper cut because you dropped the paper on your finger because your hand was numb.
• Get enough sleep and wash your hands a lot.
• Find a good support system of people that can relate to what you are facing. I went to a few support group meetings when I was first diagnosed, and I almost felt worse after I went because no one seemed to be at the same stage of life as I was. Finding other young people, men, women, moms, nudists, whoever to share your MS experience is extremely valuable.
• I think your MS is like your fingerprint-unique to you. What works for someone else’s MS might not be effective for you, and vice-versa. Keep an open mind.

I feel like a much different person than I was on May 26, 1995. 23 years later, I am a wife, a mother, a teacher, a legal assistant, a homeowner, a baseball mom, a published writer, a discerning political junkie, a sometime activist, an advocate for common sense, an extrovert, a minivan driver in denial, and a person fighting MS every damn day.