For years I didn't pay much attention to the odd issues that would come and go: light-headed, numbness, burning feelings in hands and feet, spastic muscles in my legs, and vertigo that my doctor could not figure out. In July 2011, my MS diagnosis journey began with Optic Neuritis, followed soon after by my left side going numb, and 75% of the most common MS symptoms. When my primary care Dr. said my symptoms "screamed MS", I was in denial. This was supposed to happen to other people, not me! After several months of blood tests, numerous MRI's, a spinal tap, poking and prodding sessions, and visits to three different neurologists, I was officially diagnosed with RRMS on Dec 27, 2011. I had to accept the diagnosis; all other possibilities were ruled out.
I spent a good part of 2012 going through the grief stages and have now accepted the diagnosis. I have my good and bad days, but I do my best to stay positive. I have a family to support and am still working. I try to stay active by playing with my kids, walking my dogs, and riding my bike.
I am one of those "you don't look sick" people and most are surprised when told about my diagnosis. I don't like to talk about my MS and all the weird stuff going on inside my body. I am scared of becoming an angry, bitter person because of this disease and I do my best not to focus on it. I probably wouldn't have told any of my family members or friends if my wife hadn't done it for me. I still haven't told anybody at my work.
My advice to those newly diagnosed would be: (1) Try to calm down, relax, and accept that your life has changed, not ended. Some days will be better than others; deal with each day as they come. (2) Learn all you can about the disease, but be careful what you read on the internet; there is a lot of false info and "worst case" stories out there. (3) Keep moving! We all are affected differently by MS,, but try to remain active for as long as possible. It will do wonders for your body and your state of mind. (4) Join a support group. You will meet other people with varying stages of MS and can learn a lot. Online groups are good places to start, but actual physical face-to-face interaction is more ideal, in my opinion. (5) Rest when you need to and don't be afraid to say "No" when you don't feel well.
I'm still relatively new to this and am learning what I can and can't do. For instance, I can't take a hot bath or shower anymore without major problems. I have tried different diets and supplements, but haven't found anything consistent that works for me. I was on Copaxone for 1 1/2 years, and recently started Tecfidera. So far, no major problems. Exercise is a great mood booster and helps with some of my symptoms.
I'm not sure how I can make a big difference in helping to create a world free of MS. I do a little fund raising and awareness activities for the NMSS by participating in the MS Walk and MS150 Bike Rides. My biggest fear is that one of my children would get MS when they get older. My wife and I don't have a family history of autoimmune diseases outside of thyroid problems, but now my daughter has Type 1 DIabetes (diagnosed in 2012) and my son tested positive for Type 1 genes; just waiting on the mysterious "trigger" to start the autoimmune attack.
As the saying goes, we all have to play the hand that is dealt to us. Until there is a cure, I will keep fighting.