Confusion, Shock, Fear, Denial, Panic, Anger, Exhaustion, Depression, Enlightenment, Hope, and Joy
My beautiful 10 year old daughter was diagnosed with MS last July. What happened???? What caused it???? It is like searching for a needle in a hay stack. Leading up to the diagnosis she had common fatigue, pressure on the eyes, slight slur in speech, difficulty swallowing, mood swings, no appetite, 4 days of headaches, spots in her eyes, feeling of pins and needles, and finally she said "my legs won't work".
Mom's are like detectives and problem solvers. Your child will say "my leg hurts" or " I don't feel well" and we try to figure out what is going on. Ok, maybe it was something you ate or you were jumping on the bed and fell off and hurt your leg. But, the symptoms mentioned above were not making sense and left me confused. What is going on? You never see it coming. It hits you like an avalanche. You are blindsided and left in shock. Then you google like mad (even know the doctors tell you not to). In the end you are left in a state of fear. Then you walk around like having an outer body experience and you can't breathe. Panic takes over. You can't control it! It starts out big. Like a big mountain in your path and slowly over the course of months the mountain moves farther away. You google less and less and feel trapped because you realize every angle of this disease has been looked at and dissected along with possible causes. So, the intensity of the search turns into anger. The anger takes it's toll. It leaves you sick and miserable. Exhaustion takes over and you give up. You get tired of fighting the monster. You bottom out!! Depression takes over and your mind goes to blaming yourself. Could we have prevented all of this? What did we do wrong? Exercise kept me out of that slump. Then one day my daughter said to me "mom, no one cares about this disease except you". I see her big smile and think a positive attitude is going to get us through. We can't get stuck in this place. We are doing everything possible. The best nutrition and supplements, exercise, reduced stress and humor. Yes, humor! She keeps me laughing with her sense of humor. I think her future may be comedy. She's quick witted, intelligent, and a bright light. MS will not define her life. She doesn't want to talk about it or dwell on it. She wants to get treated and move forward. Looks like the humor is working for now. No new lesions. She played soccer in 90 degrees on Sunday and no symptoms. I would like to think we killed the monster. There are no visible signs, but I am not naive. We will take one day at a time and appreciate what life has to offer. We will stop and smell the roses and enjoy each day.
Were you misdiagnosed with something else before receiving a MS diagnosis?