My Weird MS Story

I was shocked to be diagnosed with MS in 2001 at the age of 42. I had been to an extremely loud concert and left for home with severe dizziness and ringing in both ears. I thought that I had just been a dumb “old lady” that lost her hearing temporarily due to going to something that I was too old to go to. After two weeks of extreme dizziness ( whole room spinning) and continuing hearing loss (especially in the right ear) I gave in and went to the doctor. Early on, they tested my hearing and found that I couldn’t hear at all with my right ear. About that time, my right hand was starting to go numb, starting with the tips of my fingers. The doctor was alarmed and sent me to an EENT doctor who immediately thought that I had a brain tumor! After retesting my hearing that day, they found that the hearing in my right ear had improved slightly. I then went to a Neurologist and after many, many tests, I was diagnosed with RRMS. The medication prescribed for me was too expensive (Avonex) so I had to wait 5 years to begin treatment. I did well for years, not knowing the damage that was being done. In 2005, I had a severe MS attack where my entire body went numb. It took weeks to recover. I have never felt “good” since. I experience severe fatigue, dizziness, ringing in the ears, numbness and tingling of my right hand and fingers along with general right weakness. My latest MRI showed that my MS had formed a lesion in my brain stem (2012). My Avonex stopped working for me so my doctor switched me to Tecfidera. After months of trying ( and succeeding) to find funding to help pay for this new, pill form treatment, I began Tecfidera in Nov 2013. It has helped me a lot. Although I still have all of my symptoms, they seem to not be as severe. I still have a lot of super tired days, but in general I feel slight improvement! So far, all MS drugs work by “fending off” MS attacks, not improving them. To me, ANY improvement helps and I feel hopeful for the first time in years!

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  • Chris G
    4 years ago

    Hello Vicki, I had my first symptoms when 38 years old in 1995. I knew I had a problem, maybe a brain tumor, or some neurology issue. I was afraid to find out. I never went to a doctor, I was in denial stage. I would loose my balance and fall, start walking with a limp in the beginning. Later experienced cramping in legs, finding it hard to multi-task, became a wall-hugger for balance. Then I started having sleepless nights, crazy racing thoughts which made no sense, headaches, and back pain. 2008 I finally went to a Doctor, couldn’t take it any more. I was diagnosed with RRMS, thank god it wasn’t brain tumor or cancer. I take Rebif and Ampyra now. Went on disability in 2011. The damage was done over the years, I was stupid not to go to a doctor in 1995, because I was AFRAID to find out what was wrong with me. Now I have all the same symptoms, they come and go away, I have bad days or not so bad days. I walk with a cane some days or a walker other days. My MIR’s show no new activity since 2008, so the drug therapy is working for me. I take life one day at a time, and appreciate what I can do, and don’t think about, what I use to be able to do. MS has giving me a new meaning of life. So your story is not so weird, You had the strength to face your fears in the beginning. I’m proud for you being brave. Chris G.

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