By Burl Price Wooldridge, as told to Hallie Levine
My symptoms began in August 2009, shortly after my 61st birthday. I started to have difficulty walking. It seemed to be due to some strange hip weakness, which made it hard to get out of chairs and get into and out of my car.
I was about to sell my home in Oklahoma and was temporarily living with my sister in Texas. One day I turned to her and said, “I don’t think I can walk anymore. You need to take me to the hospital.” She drove me straight to the Dallas emergency room.
I’m a veteran, so I was quickly admitted to the VA health care center at the hospital. I was there for about six days. I left without a diagnosis and without even a clue as to the cause of my symptoms. They sent me home with a prescription for physical therapy. I didn’t press further. Back then, I didn’t know how to advocate for myself.
An Elusive Diagnosis
It was the start of a pattern. My symptoms would get worse, I wouldn’t be able to walk, and I’d end up back at the VA center.
You have to remember, the VA health care system is essentially a teaching hospital. There are a lot of medical students and residents there without much experience and who have never seen a case of Lambert-Eaton syndrome. They did every test that they could. I had muscle biopsies, MRIs, and an electromyography (EMG) to assess muscle and nerve function. But they were stumped as to my diagnosis.
In the meantime, I threw myself into trying to rehabilitate my body. I got a gym membership and tried to work out every day. My symptoms seemed to get better, so I assumed I’d solved the problem.
But around 2017, trouble resurfaced. I worked for a blood bank on a 10-hour shift. I began to have trouble walking at the end of my shift. I also noticed weakness in my hands. I went back to the VA center, and they did another EMG. When that came back abnormal, I was referred to a neuromuscular specialist, who diagnosed me with Lambert-Eaton (LEMS) syndrome.
I was very lucky I went to see her because thankfully she’d seen some LEMS patients before. She recognized the signs. She ordered a blood test to check for certain antibodies seen in LEMS. When that came back positive, I finally had a diagnosis.
Searching for the Right Treatment
Some people are devastated by a Lambert-Eaton diagnosis. I was excited. I was relieved we’d found the source of my symptoms. I’d felt like my life was in limbo since 2009, when my symptoms started. I’d been laid off from my job as a television producer around that same time, and I was floundering. I hadn’t been able to find a new position, and it was hard for me to switch to any other line of work given my muscle weakness. Now, in January 2018, almost nine years later. I was optimistic that if we treated my LEMS, I could restart my life.
My neurologist put me on a type of drug known as a cholinesterase inhibitor. It slows the breakdown of acetylcholine, the neurotransmitter needed for muscle function. They also started me on intravenous immunoglobulin (IVIG) therapy to help block harmful antibodies.
I noticed an immediate difference. By then, I lived in my own apartment in Texas. It had a gym, and I saw big gains when I exercised, especially when I walked on the treadmill. But I still didn’t feel like my old self.
Thankfully, when I was diagnosed I joined a Facebook group for people who lived with LEMS. I learned that there were clinical trials for a new drug. Coincidentally, the pharmaceutical company was about to have a patient meeting in Dallas, just minutes away from me. I reached out and they invited me to attend.
That meeting was a godsend. I connected with eight other patients who had LEMS, and I was able to enroll in the clinical trial. The drug has improved my symptoms. But it hasn’t been a miracle cure. I know other patients who weren’t able to walk, and once they got on it, they were able to get rid of their wheelchair entirely. For me, progress has been slow, and more subtle.
Learning to Pace Myself
The most important thing I have learned on my LEMS journey is the need to pace myself. One day I can feel fine, and then the next I will be overwhelmed with symptoms. There’s no rhyme or reason to it, either. When I have a flare, I experience an almost oppressive fatigue that makes it a struggle to even get up out of my chair. When these symptoms crop up, I must make a lot of spur-of-the-moment lifestyle adjustments and changes.
Since I can’t predict flares, I often err on the side of caution. For example, some good friends invited me recently to spend a day with them at the drag races. Did I want to go? Of course! But I had no idea how I’d feel once I got there. I might be able to stand for four hours in heat and feel fine. But I might not. So I said no. The last thing I want is to put my own health in jeopardy and mess up everyone else’s good time.
There are some warning signs. LEMS often initially affects my vocal cords. I start to sound very raspy, and sometimes, I lose my voice entirely. I view that as a signal that I need to scale back. I won’t walk my normal six laps around the track at my recreation center. I’ll rest until I start to feel better.
This past Thanksgiving, I began to experience a raspy voice and terrible fatigue. I decided to still attend a Thanksgiving meal with family, but I only stayed for dinner and went home right afterward. I didn’t want to overdo it and trigger a worse flare.
The Importance of Advocacy
I’ve met many Lambert-Eaton patients now over the years, and they are some of the most medically savvy people I’ve ever known. We’re ultra rare, so most of us go for years without a diagnosis. Many patients are misdiagnosed with another similar disease, myasthenia gravis (MG). While they are both autoimmune neuromuscular conditions, MG tends to affect the eyes, while LEMS starts in the legs.
I think it’s important for everyone diagnosed with LEMS to get a second opinion if they feel that they haven’t gotten a good response from treatment. I’ve switched neurologists over the years. I know other patients who have gone through eight different doctors. You need to find a health care provider who is willing to listen to you. Many don’t.
Here’s the challenge with LEMS: It’s a condition that goes up and down more than a roller coaster. You don’t know day-to-day how you’ll feel. My original neurologist wanted to cut back on my medication because she thought I looked so good. She didn’t listen to me when I told her I still didn’t feel like myself. I left her practice and found another neuromuscular neurologist I felt more comfortable with.
I created the first ever organization for LEMS patients, the Lambert-Eaton LEMS Family Association, in 2022. There were three reasons why. First, I felt we needed a patient advocacy organization. Secondly, I wanted to make the medical community more aware of LEMS. Most clinicians have never heard of it. The third reason is simply one word: family. LEMS is such a rare disease that I want to make sure that all patients get community support.
I tell every newly diagnosed patient with LEMS: Don’t be satisfied until you are on a treatment plan that works for you. LEMS is so rare that you may have to go through several doctors before you find someone who truly understands you and your condition. Educate yourself as much as possible. The LEMS Family Association website is a good start. Another resource is the Muscular Dystrophy Association.
The more information you have, the better you can advocate for yourself and live life as best as you are able.
