Columns

We’ve all been there. Our doctors suggest a new treatment for our rare disease, and after consulting with other patients through social media, we decide that the option is too scary. I did this with intravenous immunoglobulin (IVIG) replacement therapy. For more than a year, I held my neurologist…

This month’s “’LEMme Tell Ya’ Patient Stories in Their Own Words” features a Lambert-Eaton myasthenic syndrome (LEMS) patient I am grateful to call my friend. Price Wooldridge offers encouragement to newly diagnosed patients, and doesn’t hesitate to brainstorm with someone who is struggling with symptoms. His advice is…

One of the first Lambert-Eaton myasthenic syndrome (LEMS) patients I had the pleasure of meeting in real life was Romy Braunstein. Romy is taller than me, which is no small feat because I am pushing 6 feet. Her personality is larger than life, and her sense of humor has…

For the remainder of 2019, “LEMme Tell Ya” will feature a monthly series called “‘LEMme Tell Ya’ Patient Stories in Their Own Words.” The series will highlight Lambert-Eaton myasthenic syndrome (LEMS) patients whom I have come to know and admire. LEMS, as you will see, affects each patient differently.

I wasn’t diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) until my sons were grown. Upon his return from serving in the Navy, one of my sons remarked how happy he was that I could make weekend plans with friends instead of “just recovering each weekend after working all week” like…

In my last column, I shared wording that I’ve used to explain Lambert-Eaton myasthenic syndrome (LEMS) to my family, friends, and medical providers. However, I feel that I would be doing the LEMS, rare disease, and chronic illness communities a disservice if I didn’t admit that, at times,…

If you are like me, when you finally received a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS), you were excited to tell the world what has been causing your unexplained exhaustion, numbness, weakness, difficulty swallowing, and difficulty walking. I was ready to shout it from the rooftops! Because we have…

I was in my mid-30s when my painful, yet vague Lambert-Eaton myasthenic syndrome (LEMS) symptoms began to interfere with my daily life. I was unable to walk any distance, had widespread bone pain, and experienced extreme fatigue. My career had transitioned from public health education to pharmaceutical sales…

As a Lambert-Eaton myasthenic syndrome (LEMS) patient, you might not have identified with the experiences that I described in my previous column. However, I’m sure that most of you will relate to this one. LEMS symptoms are vague, and due to that factor, as well as the…

Most people look back on being 13 with fond memories of passage into their teen years. Those memories might include sleepovers, getting their ears pierced, or other first steps of independence. For me, memories of my 13th year include enormous amounts of physical pain. It turns out that my first…