My MS Journey
I was diagnosed easily at the ripe "old" age of 48 with RRMS. I am one of the fortunate ones in my eyes to be easily diagnosed quickly-I had a sudden onset of double vision which of course I denied as significant and stress related for over a week. Once I decided I could no longer deny it, my physician examined me and sent me immediately for an MRI. The exam pointed to issues with my 6th cranial nerve-either MS or perhaps a tumor.
After having the MRI, I was contacted by a local neurologist of my physicians choice and told I was highly suspected of having MS. He asked me to go to the hospital for a three day stay and additional testing. Once there I received the three day steroid course and a lumbar puncture which was positive for oliguric bands. My MRI had multiple areas of demyelination in the brain as well as an area in the spine. After discharge, my local Neuro was very candid and said due to my age of onset he felt I need more specialized care. I was thankfully referred to the MS specialty center at the Ohio State University where I have received the most aggressive and wonderful care.
I spent three years without remission. Failed on two frontline drugs-Copaxone and Tysabri. I tried the Tysabri as part of a research study as I am positive for the dreaded antibody. After failing on both, I was given a 6 month treatment with Cytoxin-a common drug used to treat cancer patients. My dose was much lower but the intent was to suppress my immune system and reboot it. This finally allowed me to have an MRI with no active lesions for the first time in three years!!!
Really none of what I have just said is all that important. What is important is how you deal with the diagnosis and the hand you've been dealt at that moment in time. For me, I was relieved I didn't have a brain tumor! Then I was relieved because I knew MS treatment had come a long way since the time I had started my nursing career at the age of 20. Those were two great positive points to start with.
As I proceeded along my journey I continued to find reasons to feel blessed that MS had come into my life. I know that may seem like a hard concept to grasp but I will try to explain. I was a very seasoned emergency nurse. At the time of my diagnosis I was the manager of a very large and busy ER. ER nurses and physicians tend to become very cynical over time and do not see people as individuals. They see "drug seekers", "alcoholics","mental health patients". My point is that becoming a person with an invisible illness gave me more insight into looking at people from just outward appearances. It made me go back in time to that innocent new grad who believed in getting the whole story. I learned once again to never judge unless I've walked in those shoes.
Once my disease progressed to the point I knew I wasn't able to keep on top of things anymore at work, I opted for disability. My cognitive testing was conclusive that my MS was affecting my ability to do things that were once easy. This was difficult but the blessing I learned was I for so long had not balanced my work/family life. So now I am able to concentrate on giving time to me, my family, my friends and begin living.
In closing, MS is not a punishment unless you choose to let it be. For me I choose to look at it as a blessing for all the reasons I spoke of and many more. I practice gratitude daily and it makes all the difference in the world
How many specialists did you see before finding "The One"?