Biography

I’m a retired 66 year old grandmother of two and wife to Wes, a high school teacher.  My life has drastically changed over the past year with bouts of unexplained muscle weakness and fatigue. I used to walk, ride my bike and swim. Playing with my young grandchildren became difficult… they wanted me on the floor, but Grandma couldn’t get up! I began telling my husband, “I feel like I’m dying.” My husband and adult children thought I was depressed… “If you just get out of the house and exercise, you’ll feel so much better.” I couldn’t explain to them that fatigue and my legs wouldn’t cooperate with my desire to do just that!

Through this last year’s journey of doctors and a myriad of tests, I’ve found out that I have severe sleep apnea, cervical stenosis and LEMS. Lambert-Eaton… no one has heard of this disease. They are skeptical of my diagnosis. Well, I am too. All of the antibody tests have been negative. Twice. It was the EMG that alerted my neuromuscular doctor. Twice.

The LEMS symptoms that come and go cause me to question my sanity some days. I go from debilitating weakness one day and then running errands the next day. Mestinon is helping, but the effects wear off in about three hours. The big question for my doctors is: why LEMS?  No autoimmune diseases. No cancer found, so far. Multiple lung nodules are too small to biopsy, so another CT scan in February. I have so many questions about living with this disease!