About a year and a half before talk show host Montel Williams was officially diagnosed with MS, I had my first episode.  Three quarters of my body went numb with pins and needles.  It began in my feet, just my feet, feeling like they were asleep.  Then it was up to my shins, then knees, then thighs, waist, and finally my chest.  It didn’t stop there; it went partially down my arms from my little finger to my middle finger and all the way up the lower part of my forearms. 

A few things about me, I am a drummer.  When this first happened I was in a band that was playing a lot at the Knitting Factory in New York City and in a few clubs in Boston.  We already had shows booked and I refused to cancel them. I refused to stop playing.  I couldn’t really feel my sticks or my bass drum and hi-hat pedals, but I knew that if I didn’t play it would consume me.   At this point, I didn’t have any loss of functionality and I could walk, play drums, and do most things but I couldn’t feel anything.  I had blood tests and MRI’s and they all came back negative for vitamin deficiencies, thyroid problems and other possibilities.  However, what the MRI found was a spot on my C4 vertebrae.  My neurologist refereed to it as cervical demyelination and said it was similar to what happens to people with Multiple Sclerosis.  I immediately got scared, but he said that right now it wasn’t in my brain and that was a good sign.  He said most likely it was a onetime thing, and it should go away on it’s own.  He hesitated to diagnose me with MS.  At this point I should have gotten a second opinion, but I didn’t because I heard what I wanted to hear.  He decided not to put me on any of the MS therapies (a.k.a. the A,B,C drugs. Avonex, Betaseron, Copaxone. As of March 2002 Rebif was approved by the FDA as another treatment for Relapsing Remitting MS), except for some oral steroids that made me feel bloated, edgy, and sleepless.  For the time being I was happy because I was told that I didn’t have MS.  He told me that it would just go away and chances were it would not come back.  I had follow up appointments, and even another MRI, and my neurologist told me that there was some scaring, but since it went away, as long as it didn’t come back, I didn’t have anything to worry about.

I didn’t have MS.

I thought this was great news, and it didn’t come back.  I started going to the gym and working out, taking better care of myself, eating healthy, and I did something that I always wanted to do; I bought a snowboard.  Here it was the middle of July, barely a month after I started feeling normal again, and without hesitation I went to a local snowboard shop and bought my first snowboard.  I was determined to lead an even more active life.  I was determined to get healthy and learn from the experience.

I remember the day Montel Williams held his press conference and announced to the world that he had MS.  I remember thinking how fortunate I was that I had an MS scare, but that I was ok, and my heart went out to him.  I felt like I had been there, but was fortunate enough to just have one plaque build up and not multiple ones.  I made up a term for it and convinced myself that I had “singular sclerosis”.

This mentality kept me going, and I got to the point where I was constantly looking for more to do, more things to see, places to visit and more life to live.  I spent two wonderful seasons snowboarding, I went skydiving, I got into cycling, and wakeboarding and I continued to surf.  Instead of playing in one band, I was playing in three. I was determined to do anything and everything I desired. 

On Election Day in November of 2000, I went out to surf before heading to the polls to vote. When I got out of the water I noticed that my right leg was numb.  The water was in the low 50’s and the air wasn’t too much warmer, so I must have gotten a little chill.  I tried not to think about it, and wrote it off to the cold water.  It had been almost three years since my MS scare, and in the back of my mind, it had always been my biggest fear that the numbness and pins and needles would return. 

Those two letters, MS; the first of the letters that make up my initials, the letters for the software most people use on their computers, the letters of a trucking company that has M.S. Carriers posted in large block letters on the side of their tractor trailers.  Those two letters remained in the back of my mind, and those two little letters were now threatening me again. Once I voted and headed to work, my leg still wasn’t warming up.  My leg was feeling more like it felt during what I now realize was my first MS flair-up.  I wrote it off for another day.  I figured I had pinched a nerve in my lower back, and that was what was causing the sensations.  Another few days passed and in the back of my mind I knew that it was MS, but I convinced myself to wait another day or two, on the slim chance that it was a pinched nerve.  Finally I called and made an appointment with my doctor.  He examined me, and made an appointment to have an MRI done the next day and then a follow up appointment with my neurologist to go over the results.  I went in for the MRI, and this time I was confused when I showed up for the scan.  They told me that the neurologist had only asked for a MRI of my brain, not of the cervical vertebrae as well, like he did three years ago.  I would later learn that it was only the brain scan that he needed to make a diagnosis of MS. I asked my girlfriend, to come with me to the doctor’s office and as I drove I knew what it might be.  However it wasn’t as bad as it was the previous time, so I was sure that it would be easier to get though if it were indeed MS. 

I was wrong.  Nothing can prepare you for those three words, “You have MS,” and even though I had thought that in the back of my mind since the day I got out of the water in November, I was stunned.  Everything slowed down, and I felt cold.  My doctor said not to worry, that it wasn’t a particularly bad flair-up, and that he wouldn’t treat it with the steroids right now, but if it got worse he would admit me to the hospital and start me on a 4-day course of IV steroids.  He felt that unless it got worse, there was no need.  Before I left, my neurologist gave me several information packets for the three “A, B, C, R” drugs used for treating MS.  He told me to take a look at the information and watch the supplied VHS tapes, and to make a decision of which one I was most interested in.  I was just told that I had MS, and now he wanted me to make a decision as to what type of injection therapy I wanted to go on? 

It was raining as my girlfriend and I walked to my car and I told myself everything would be all right.  When I opened the door and got in my car, I just sat there and started to cry.  I cried for a long time, and all I could think of is how much those three words changed my life.  I asked my girlfriend to go in and get another information package, because they had only given me two of the three at the desk.  I sat there in the dark.  I sat in the dark with my car running and the radio off, listening to the rain, and for the first time in my life I was confronted with the notion that I had a disease for which there was no cure.  I was scared and felt completely alone.

Over the next several days things got worse.  At first it was just my right leg, but then my left leg started to get the pins and needles and numbness.  Then both legs got weak, first the left, then the right, and then the left one felt like it was on fire.  I would go to bed at night and wouldn’t be able to sleep because it was so uncomfortable to have anything touching my leg.  It was hypersensitive to the touch and felt as though it was constantly burning.  Then the numbness moved up my left side, as though someone shot it full of Novocain.  At this point I was scared, depressed, and things were continuing on a downward spiral.  As one thing got better, a new problem would take its place.  As the tingling went away in my left leg, it began to get weak, and I began to have balance issues.  It got to the point where I couldn’t stand on one leg to put on my pants, and I would worry about tripping and falling.  I did.  I revisited my neurologist and he admitted me to the hospital for a lumbar puncture (a.k.a. spinal tap) and to begin the IV steroids.  Over the next several days I developed nystagmus in my right eye and my vision doubled.  I had optic neuritis. It eventually got to the point where I couldn’t move my right eye to the right at all, my eyes were no longer tracking together.  As my legs improved, my eyes got worse, and then I noticed that the left side of my facial muscles became weak and the pins and needles moved into my right arm.  By this time it was March and my 28^th birthday.  It had been five months since this began and I was diagnosed with MS.  I wasn’t back to normal and I wondered if I would ever be.  This was nothing like the first episode I had when I was 25, and at least then I could still play my drums, still feel alive.  Now, I could barely see, barely go up the stairs, couldn’t snowboard or surf, and I couldn’t play the drums… I had lost my coordination.  These were the hardest days of my life.

The turning point for me during all of this was when I made the decision to go to Cinnamon Rainbows, the local surf shop, and have my surfboards sold on consignment.  I walked into the store and the owner Dave, a long time friend of mine asked me where I’d been and why he hasn’t seen me out in the water.  I explained that I was diagnosed with MS, that things still weren’t right with me but were getting better and that I was coming by the shop to sell my boards.  He said that he was sorry to her that, but that he didn’t think I should stop surfing. His reaction and response was the best news I’d heard and the last thing I expected to hear.  Dave said, hey you should talk to “Wingnut” (a.k.a. Robert “Wingnut” Weaver, one of the stars of the Endless Summer II).  He has MS, he was diagnosed a year ago and he told me about it the last time he visited the shop, in fact he’ll be here over the 4^th of July weekend and you can meet him then.  In the meantime you should give him a call or send him an email and see what he has to say about his experience and still surfing after finding out he had MS.  This became the most profound moment and a true turning point since I had been diagnosed.  There I was ready to give up something that I loved only to find out that one of my “hero’s” who is a professional surfer also has MS.  I talked to Wingnut a few days later via email and he really helped me to realize that life wasn’t over and that I should just wait out this exacerbation and get back in the water as soon as I felt I could.  He said that his neurologist had talked to him about how some of the latest research on MS was showing that vitamin D was effective in helping people from relapsing and he also encouraged me to get in the water to keep cool.  At this point I started thinking that going out to surf was a type of treatment for my MS. I was getting exercise, I was in the cold water of New England so that would keep my body temperature down on hot days and I was getting Vitamin D from being out in the sun.   After that fateful spring day at the surf shop, I still had about 2 more months before I got back into the water and started to surf again; however, I fondly look back on that trip to the surf shop as the turning point for me and helping me to finally come to terms with being diagnosed with Multiple Sclerosis.

Michael Venn

msvenn@gmail.com

Mike & his son Evan