You have MS but it doesn't have you

By hyperion02

2 min read

MS Stories I am from a small town in Colorado. I lived there my whole life went to school and graduated here. Out of high school I started to work in the great oil field.. we would travel from Colorado to Texas to work. Work ended up slowing down in Colorado so I ended up moving to Texas with my wife..

About 2 years later I was on a night shift. Fracturing is a very physical job sometimes so being sore or pulling a muscle is common. When I woke up one morning I had limited movement in my right hand. Later on in the week I couldn't pick up a pen and write my name. Thinking I pulled a muscle I turned it in to work being we have to turn everything in that is a possible injury. Later on in the week I was noticing weakness in my legs. I was now starting to wonder... maybe a pinched nerve?

I am not from here so I looked online and set an appointment with the first neuro I see.. not knowing he was a surgeon.. He took me in and did some tests and asked questions then sent me for an MRI that same day on my neck. When I came back he had already looked at the MRI and told me he suspected MS.

Not knowing what this disease was I was worried and lacking information. He sent me to a different neuro and had me get another MRI and sent me to do the steroid injections for 5 days. During christmas day I was in this hospital wondering what is going on. My brain MRI came up abnormal and he then wanted to do the spinal tap to confirm.

It was February when I got the definite diagnosis of MS. I am now on daily injections living life. Its hard to be positive in the beginning but it starts to rub off on you when you realize there is nothing you can do about it.

You have MS but it doesn't have you. It's not the end just the beginning of a new chapter. We can help each other through this. Stay in the fight. I was a boxer my whole life and you can't give up thats what I was always taught. And I'm gonna keep that always in my mind.

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garlicfrau Member
That saying of "you have MS, but MS doesn't have you" is probably the single most irritating and untrue piece of garbage that most of us have ever heard. What a bunch of crap! If you are fortunate, you will be able to get through many years without being terribly affected by the disease, but the chances of that are slim. Your life will most likely be consumed with one adaptation after another, and in order to keep your self in a healthy frame of mind, you need to (first and foremost), admit that this disease is going to be a life-long battle, and cavalierly chanting: "I have MS but MS doesn't have me" is not doing you any good at all. Rather, start educating yourself on how to be the healthiest person you can possibly be – – change your diet, adjust your lifestyle, make a habit of regular physical therapy and daily exercise, and always anticipate the next loss, so you are ready to deal with it and adapt. having dealt with primary progressive MS for 14+ years, I certainly know what I am talking about.
1. Laura Kolaczkowski Moderator & Contributor
 Hi, garlicfrau. On some days that saying irritates me, too, because MS is a constant companion and no matter what I do, I can't shake it. But I do my best to not let it dominate our relationship and find lots of other things besides MS to fill my time. Phil is being diagnosed and treated for MS at a time much different than when you were diagnosed 14+ years ago. He is also talking a different form of MS - RRMS and not Primary Progressive as you have. PPMS is the cruelest form of MS and I am so sorry you live with it - I'm hopeful this new wave of researching PPMS will yield help for people with this form of MS. I have a dear friend who has been in a wheelchair over 20 years, has a tracheotomy, suprapubic catheter, and spasms so horrible that they have snapped some of her bones which are brittle from all the treatments of steroids. On top of all that, she lives on a social security check thatdoesn't begin to cover the costs of her medical and living costs. I know what she goes through with PPMS and can only marvel at how she chooses to go on day after day. It appears you are making that same statement and fighting the best you can to not let MS have its way with your life. These days, most people with RRMS will live a long, relatively healthy life equal to their peers. If they are on treatment for the MS, the odds are greatly in their favor - something like 85% of us will remain ambulatory, able to walk under our own power without needing a cane or walker or wheelchair. There are lots of reasons to be hopeful with this possibility and not anticipate that each day will be a struggle. Education and healthy lifestyle choices, as you point out, are another key to success in finding a way to living with MS. I'm sure you have done your homework and perhaps you can take the time to write your own story to share and include the lessons you have learned along the way. One of the best educations we get are the ones from each other's experiences. I hope to hear more from you. ~Laura
2. Lisa Emrich Moderator & Contributor
 Hi Connie, It's good to see you here! So long since we've been in touch. I kinda like what Marc ("Wheelchair Kamikaze&quot😉 often says, "MS has me by all the nasty bits" (or something to that affect). Not only does it make me smile, but it reveals a bit of a fighting spirit in his approach to living with a nontypical case of MS. But I kinda find the phrases people use to describe their journey or relationship with MS to be very interesting. Some are inspiring, some annoying, some cliche, some clever, and some very honest. Words have the power to express so many different thoughts, beliefs, and hopes. My favorite word - "adapt". I try to keep that in mind each time I am faced a new challenge. It helps me. Hope you are doing well, Lisa
khoward Member
I really enjoyed your story and I do believe that a positive mindset can help Never let anyone change your belief. If it is working for you then keep at it. Yes you will face difficulties but each person is different. don't let anyone else's situation place you in the corner - up against the ropes - fight through with education, strength and courage-!!!! Keep fighting!!!
Laura Kolaczkowski Moderator & Contributor
You're right - having a postive attitude goes a long way. And the drugs we have now to treat newly diagnosed MS is so very different than what was available even a few years ago. I'm so glad you are feeling stronger and learning to live with this new companion. keep it up, Laura
Lisa Emrich Moderator & Contributor
Hi Phil, I often tell folks that the first year after an MS diagnosis seems to be the hardest. It was for me. I commend you for having ridden this roller coaster to a level plane in a relatively short period of time. You're right that MS is not the end all. It does change things but then again, humans are always in a state of change in many ways. Learn to adapt - that's what I focus on in this journey. And sometimes you have to anticipate what the opponent ("MS&quot😉 is about to do so that you can make quick adjustments. Isn't that one skill a boxer learns early on? Keep up the good fight and never give up. 😀 Lisa
sonya Member
Hi Phil! What an inspiring article!! Having been diagnosed 7 years ago, I can remember the fear, not only of the diagnosis itself, but of the lack of knowledge, I had about MS. I remember my neuro saying to me, "this isn't the end of your life, just a new chapter, & a different road. Empower yourself with knowledge, do everything you can to help yourself." I won't tell you, this road has been without it's bumps, but I am still living life the best I can. You my friend, have chosen to face this with the skill of a boxer; I say bravo to you!! I think a good attitude is key to fighting this disease. Thank-you for sharing with us. I have found this site to be not only informative, but good for the soul. The moderators here are fantastic people, who face the same struggles we do, & even though my family is supportive, sometimes they just don't get it. Everyone here "gets it". Prayers & best wishes to you, as you continue the fight! Sonya
wheels460 Member
Hi garlicfrau, I was diagnosed in 2000 had it years before then. I know that life is not guaranteed to be rosy and 1 day above ground no matter the circumstances is better than 10,000 below. A positive outlook on life makes things a whole lot better.

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