MS - My Story
November 11, 2014
A little about me...
I am 48 years old and I have been diagnosed with Multiple Sclerosis. My diagnosis was 2 years ago (October 1, 2012). I have an amazing family! I have been married to my husband for, a record these days I know, 27 years! I also have 4 adult kids (ages 35, 32, 19 and 17) 2 grandkids (ages 15 and 14) and a super adorable and extremely smart Bichon Frise - Lucy.
When it all started for me...
I was on my way, driving, to my now 17 year old’s football game (September 26, 2012) when I noticed that I wasn’t staying inside the lines on the street. I thought to myself that, since I was due for my annual eye-exam the following week, it must have just been that I really was due for it. I made it to his game safely, thank God, and when I began to walk to the field where he was playing my balance was as though I had one too many to drink (wish that was the case but not so much). Again, I just put that off as just probably a part of something going on with my eyes. I made it through the game and home but was a bit concerned so I called my eye doctor to see if I could possibly come in sooner than my scheduled appointment and they put me on for the next day. When I arrived (September 27, 2012) and started my exam I was seeing double and triple of everything. My eyes were moving all over the place making it very difficult to complete the exam. My eye doctor did not like what he was seeing (me either HaHa) and said that I immediately needed to see an opto-neurologist. I did this the following day, September 28, 2012. By the time I arrived to this appointment, my lips were tingling and went numb (also one of those sensations I’ve experienced after feeling a bit tipsy). The opto-neurologist apparently didn’t like what he was seeing either and said that I should get an MRI done as soon as possible and if anything should occur out of the norm that I should get to the ER immediately for my MRI. So I planned to do this on Monday the following week since I didn’t expect anything more “out of the norm” to happen while I waited to go. Yeah, not so much on this one either. The following day (Sept 29, 2012) I experienced more of the same - mostly triple vision, lip numbness and balance issues while walking. And then it hit me on Sunday, September 30, 2012 where I was not able to walk without assistance from my husband…very scary! So, we immediately went to the ER and got in for my MRI that evening. The next day, October 1, 2012, the hospital neurologist came in and told me that his diagnosis was Multiple Sclerosis from the results of my MRI and that it “lit up like a Christmas tree”. He also wanted to perform a spinal tap to confirm this and did. I was put on IV Steroids during my stay at the hospital which helped calm down the triple vision and not needing to be held while I walked.
In the weeks to follow ALL my symptoms wanted to greet me…
- Brain Fog - the worst symptom EVER
- Double/Triple Vision (this went away after completion of the mega steroids pumped into me although I was left with feeling as though my eyes were wrapped in clear plastic-wrap (and they still do)
- Walking/Balance Issues
- Short-term Memory Issues/Loss
- Concentration Issues
- Distraction/Focus Issues (what I call the “bright shiny object” effect)
- Severe Fatigue
- Muscle twitches/spasms
- Numbness in legs, feet and hands
- Depth Perception Issues
- Speech Disturbances
- Noise Sensitivity/Intolerance
- Emotional/Mood Issues
I would love to be able to say that it’s been an all-encompassing, positive attitude road for me to this point…I unfortunately cannot. I started this journey with the positive outlook I always had practiced in my life and it slowly started to creep away.
My family has been remarkable through this journey with me with their love, support and tolerance of the “new” me….no it’s not perfect, best case scenario, but what family is right? My friends too and boy oh boy, you truly learn to know very quickly who your REAL friends are and hold & keep them close to you and always in your heart. These are the ones that stay in your life through good & bad and through thick & thin and I am grateful for now being able to know who they are.
Not too long after being diagnosed and keeping a daily journal I started once a month Tysabri infusions (Dec 14, 2012). I am happy to report that keeping a daily journal was good practice since you need to know everything about your symptoms and any and all changes with them being on Tysabri due to the risk of PML (a serious brain infection you are at risk for if you test positive for having the JC Virus with being on Tysabri).
I kept up my daily journal for about 7 months after being diagnosed and stopped after my 6th Tysabri infusion. To me it appeared all was “status quo”, all was the same thing day in and day out and quite honestly I felt like I was torturing myself in that I felt that this constant reminder of my disease living it was enough so why in the world would I write it down UGH. I wanted to forget about my disease so my rationale was to vacate the journal since you can never forget this disease. It is with you always. You can’t simply walk away and leave it home. It becomes an extra “part” of you wherever you go. If there is anything noteworthy and out of the ordinary of what I am living with I will write it down and bring it to my neurologist’s attention…other than that I put my daily journal to rest. I have chosen to write about different things I experience with this monster of MS and me and maybe someday can create something from it to help others with their struggles.
About February/March 2014, about 14 months into my journey I surrendered. I started this journey with pieces of me that were still left and fought hard each day to “hold on” and not let go until I admitted to myself I alone am not able to continue without help. I alone will be defeated if I didn’t get out there and reach out for help. So I found different support groups and other types of holistic approaches to help me feel better and to cope better day to day. What a blessing!
When you get a chronic illness that is as mysterious and as messed up as MS is, I for one can truly say, you realize eventually you are not alone. I realized that I am not willing to give up the happiness and joy I once knew and felt in my life. I wasn’t willing to negotiate that part anymore and I felt I was giving up and giving in to this damn disease. I realized and accepted this is happening to me and God as my witness I was going to do something about holding on to the wonderful me I once knew and miss so much.
I can say I feel fortunate that my realization and putting my game plan into action came sooner than I know most do. Maybe, just maybe, I can be more of an inspiration to myself and others along my journey. I want and quite possibly need that to be a reality.
How many specialists did you see before finding "The One"?