Well, mine has fewer twists and turns than yours Sally, but I seem to be incapable of telling it succinctly. So with that said, here it is for what it is worth:

In June 2004, at the age of 34, I had been working at a new job for about 3 months. After two years of helping two of my brother-in-laws ride in an MS150 bike ride (San Antonio to Corpus Christi, Texas), I had decided that I was going to ride as well. I signed up for a gym membership to start exercising again, with plans to start riding my bike again and training for the ride. The gym offered an "orientation session" to introduce you to the gym and help you set goals and plan to reach them.

On the day I was supposed to go to the gym for that orientation and start on my path to riding the MS150, I was sitting at my desk around 9:30 am and suddenly lost all the hearing in my left ear. Over the course of about 5 seconds, it was just gone. Imagine the feeling when you are going up or down in an aircraft, and your ears pop. That is what it felt like. I spent a few minutes trying to "unpop" my ears before realizing that wasn't it. I then took a quick trip across the street to a drug store to get some Qtips so I could clear out whatever was plugging my ear. That wasn't it either.

So I called my PCP. Surprisingly, they had room to see me that afternoon. So I went in to see him. He checked me over and when he tried to use a tuning fork to test my hearing a number of different ways, he was surprised to realize that I truly had no hearing at all in my left ear. It wasn't just lack of sound getting through, there was no nerve sensation coming from my inner ear. He left briefly, then came back and told me to go see an ENT...gave me their card and address...and said "don't bother calling them, just go. They are expecting you." That is when I knew something strange was going on.

The ENT was pretty puzzled. I had over 90 dB of loss in all frequencies in my left ear...what would be called "profound" hearing loss. I didn't have vertigo like they would expect with Meniere's disease. I didn't have signs of viral or sinus issues. So they sent me for an MRI and put me on oral steroids. I went for the MRI, and by the afternoon of the 2nd day, I hadn't heard anything from my PCP or my ENT. So I started calling both offices looking for results. Normally they would have already called and said "everything was fine"...but they hadn't.

That night, around 7-8pm, both docs called me back...both had the same message...there are abnormal spots in your brain. They could be nothing, or they could be a demyelinating disease such as MS. They sent me to a neuro who wanted a spinal tap. The spinal tap was negative for oligoclonal bands. By then, I was nearly 8 weeks out from the initial hearing loss and the hearing was starting to slowly return. The end result from the ENT was a diagnosis of "Ideopathic Sudden Neurosensory Hearing Loss". Which is fancy doctor speak for you lost your hearing and we don't have a clue what the cause was.

The neurologist was more descriptive but similarly non-committal. She told me that I had spots that were suggestive of MS. BUT...there were not enough spots or not enough in the right places to cause her to call it MS. At the time, I understood what she was saying to mean "I don't know what you have, but based on your MRI, I don't think it is MS". Today, I understand that what she was really saying was "I think you have MS, but your MRI doesn't show enough lesions or the right kinds of lesions to allow me to give you an MS dx under the McDonald Criteria".

By this time, I had missed enough training and working out time that I didn't ride the MS150 that year. I once again helped my in-laws and their team of riders. I did start going to the gym and exercising. In May 2005, I got out and started riding my bike. My first "training ride" was 4 miles around the neighborhood. Over the course of the next few months, I worked my way up to a long ride of a little over 50 miles in one day and ditched my 15 year old mountain bike in favor of a used road bike.

I rode the MS150 in October 2005 and it was brutal. The temperature was 95-100F and the heat index was 105-110F. We also had about a 10-15 mph headwind to fight against. I made it about 67 miles out of 90 on day one before I had to quit. I made all 62 of the miles on day 2 in similar conditions. At one point, I remember laying in a small patch of shade at a break point about 50 miles in and looking up at the cloudless sky. There were about 15 vultures circling over us, and I found myself wondering if they thought we weren't going to make it or if we just smelled that bad?

In 2005, I had an annual MRI to check on my condition. Nothing had changed and I felt fine. In 2006, I got an earlier start on my training, did a better job increasing my mileage, and had the joy of my wife joining me in training for and completing the entire MS150 ride from wire to wire that year in much nicer conditions. I felt great, had no further symptoms, and the annual MRI requested by my neurologist was almost an afterthought. I did the MRI as part of my annual physical and the written report said something like "No changes to the hyperintensities in the white matter of the brain." So I almost didn't even go to the neurologist. I mean why bother? I felt fine, there was no change to my MRI...

But I did go. On the day I was turning in the last money I had raised in the MS150 to the MS Society, I stopped by the neurologist's office for a quick visit. She took a look at the scans on the CD and came back into the room saying "I guess a picture really is worth a thousand words isn't it?" I looked up at her wondering what she was talking about, and then she told me I had MS. The rest of the conversation is mostly a blur now (as is about the next week of my life), but I do remember that she told me that the radiologist was correct about no changes in the respect that I still had spots in my brain...but now instead of 2, I had 7, and that was enough to allow her to Dx me with MS.

I started on Copaxone and went on with my life. But without really thinking about it, I started changing the way I thought about the future. I started thinking things to myself like "Is going to graduate school really a good idea, when I might not be able to work much longer?" or "If I really want to do a trip to hike in XX country, I probably ought to do it soon while I can still walk ok."

I was subtly taking in all the things I had read about MS online and assuming they would all happen to me sooner rather than later. It was a tough period in my life, but somebody online gave some great advice, and I am ashamed that I can't remember who it was. They deserve credit for it, so whoever it was, stand up and take a bow. They said "You have to live your life, not your disease." I took that to heart ever since then, and stopped worrying about when or what MS might take away from me.

I do have to admit that it has been easier for me to do that than it would probably be for others, since my MS has given me no overt flares and little in the way of physical difficulties since that first episode of hearing loss. My hearing never really fully recovered and I have trouble hearing conversations in noisy places. I had to stop riding the San Antonio to Corpus Christi MS150 and start doing the Houston to Austin MS150 because it allowed me to train in the late winter and spring instead of through the summer months. That was due to the heat just zapping my energy levels when I would ride. But otherwise, I have been remarkably lucky in how little my disease has progressed in terms of outward symptoms. I have a lot of cognitive issues that have gotten worse over time, but how much is MS and how much is getting older, I have no way of knowing.

So from 2006 to 2009, I was on Copaxone, doing fine, feeling stronger and stronger on the bike. Even though I was gaining weight, I was in better shape and felt better when I rode each year. So imagine my surprise in 2009 when I almost skipped my MRI. I thought "I feel great, why do I even need to do this?" Finally, the neuro's office called and asked me to schedule it, so I did. I went in expecting to hear the usual "You look fantastic...I would never guess you have MS just from looking at you!".

But I didn't. She brought me into her office and showed me the scans from 2008 and 2009 side by side, and my lesion count had doubled. Even with no flares or obvious new symptoms, my MS was still there. So I switched to Rebif, and have been on it ever since. United Health Care made two attempts to force me off of the Rebif and onto something else strictly to save themselves some money, but my doctors stood their ground and kept me on it. Special thanks go to the folks at EMD Serono and MS Lifelines for stepping in with their copay assistance program when United Healthcare decided to raise my copay to over $900/month.

Today, I find myself in an odd place. Over the last year, I have lost about 70 pounds and avoided becoming a diabetic. I have been taken off of one blood pressure medicine and had the dose of another cut in half. I am WAY faster on my bike and am probably in better shape than I have been at any time since college over 20 years ago. I just bought a new bike and picked it up two days ago to celebrate my weight loss. I just finished taking a Spinning instructor certification class and have started teaching Spinning classes after work at my gym.

So that is my story for now. I look back and shake my head at the vast difference between the picture my mind painted for me in 2006 of where my life might go in the next 10 years versus what it has become in reality. In April, I will ride in my 11th MS150, and in August my wife and I will celebrate our 20th wedding anniversary. If there is anything that causes me concern today, it is that every time I have felt this good in the last ten years, MS has found a way to remind me it is still with me. I will have another MRI on Friday morning...wish me luck!