What is with my MS body???

I was reading the backstories of some of my fellow MSers and was taken aback. I noticed that before they began their multiple sclerosis medications, they had exacerbations. These flare-ups were sometimes frequent, and often they were extremely debilitating. When these individuals started the MS medications occasionally, the exacerbations nearly stopped.

I am not sure how or why things have been going this positively for me. This is the follow up to my personal multiple sclerosis story. I always had minor stumbles, falls and occasionally an exacerbation that required steroids. In the beginning, I tried several of the multiple sclerosis A-B-C drugs. I took these disease-modifying meds for just over two years. During that time I had significant deterioration and no success in slowing the disease progression.

I began to do extensive research to find everything out there about multiple sclerosis. I was looking for anything that had been positively impactful on MS symptoms. For instance, I discovered that in Florida there was the bee sting treatment crowd. These individuals visit a bee specialist who has a personal beehive. Each visitor will get stung fifteen to twenty places usually along the spine. There was absolutely no chance on earth that I would ever go this route.

There were also plenty of diets that touted to be helpful specifically for multiple sclerosis. Just like the diets for those looking to lose weight the list of eating plans were plentiful. There were even some bodybuilders and fitness gurus that revealed that they had MS. Yet, when they began taking some product like Alans Anti Auto-immune Amalgamation, they became cured. They will then offer to sell the aforementioned product to you for the low low price of $69.99.

I did my research and found an MS supportive diet that would require the least amount of change in my eating habits. It is less of a diet and more of a lifestyle that reduced ones saturated fat intake. This lifestyle also eliminated your consumption of beef, pork and lamb in the first year. After the first year, the lifestyle requires you only to limit the use of those meats.

My continued studies also found a medication that has been safely used since the early eighties. This medication was FDA approved for the treatment of drug and alcohol addiction. The FDA approved it in much higher doses in its inception. I was confident that it was safe in much lower quantities that are required for multiple sclerosis. It was touted as beneficial for most autoimmune conditions as was proven with several studies. I found a prescribing doctor and began to take this medication in 2004 and continue to take it to this day.

I have been on this same medication for fourteen years with no adverse effects. The occasional difficulty still arises. However, ninety-nine present of these issues has been due to my taking unnecessary safety risks. My risky behavior includes things such as poorly managed seating transfers and moving when I know that my body is not ready. Although, I should know better and I do know better I do not actually do better.

Occasionally my legs jump like a first grader hopped up on excessive amounts of Halloween candy. Other times my legs stiffen up like I am a statue of a kicking soccer star. These muscle spasms are something that MS meds cannot stop. Soon I will be trying Botox for the muscle spasms in my legs. I am always searching for things that may improve my quality of life.

I also exercise in a pool three days a week for two hours with almost no negative impact. I know people with MS and other than a mom who chases her little ones around all day, most MSers do not move enough. I believe that many of them are too fearful of their disease to try.

I confess that I overdid it when I began the actual swim lessons that I started several months ago. My abilities at home were negatively affected in a significant way. Thankfully I realized this change and began to cut way back on my workout intensity. I continue to get stronger in my upper body mostly, and my swimming skills are improving. However, my positive progress never moves as fast as I would like.

So that is “the rest of the story” Paul Harvey. Fourteen years on this off-label medication and over three years of moderate water fitness. Sixteen months of more intense water training and more than five years of socializing like never before. I have not had an exacerbation in well over a decade. The one question that has been keeping me up at night as of late: is there going to be an eruption of Mount ST MS Helen? Am I overdue for an explosion? I suppose just like everything in life only time will tell.

This just in: After I received my first custom fit manual wheelchair, I began to train for a 5k in said chair. Exactly four months after I started my training I completed my first 5k. This proved to me that I could accomplish anything that I set my mind to.

The next challenge that I will attempt is the “Swim for MS.” In October I will try to swim 350 laps to raise money for multiple sclerosis. Each lap is a scary twenty-five meters equaling just over 5.4 terrifying miles. This will not only be to raise money for MS, but also be an attempt to challenge me once again. All of this is a reminder to not let fear decide what I can and cannot do. We do not accomplish anything if we stay inside of our safe zone.

These accomplishments seem small to most and for the average person they are. However, if you knew where I was five years ago or even one year ago for that matter these are massive achievements. I will be proud of this forever. Success comes from struggle. Getting knocked down means that you are putting in the effort and the winners circle is close at hand. “Never retreat, never surrender.”

Keep the faith. The most amazing things in life tend to happen right at the moment that you are about to give up hope.

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