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What Was Your First Symptom?
What was the first symptom that ultimately led to your Lambert-Eaton diagnosis?
When you experienced it, surely you had never heard of LEMS or perhaps any neuromuscular disorder at all. It must have been mysterious. Perhaps you’d never felt anything like it before or were baffled by what was going on with your body.
For me, it occurred in 2009. I was selling my home and was temporarily staying at my sister’s home. I’d been there only a few weeks, but moving me, three cats, and some of my belongings were very stressful. I had a lot of stress in the last few months. Increasingly I began to feel weaker in the hips. I was having difficulty getting out of my car on errands. My walking gait began feeling awkward. This rapid onset weakness in my hips continued quickly. I was having difficulty getting out of a chair, and the walking took more effort. On a Saturday I told my sister, “I don’t think I can walk anymore. Please take me to the VA Hospital”. That was my first symptom. I had no clue about LEMS, and it was 9 years before I did.
What was your first symptom? How did it sneak up on you, or did it hit suddenly? Let us know in the replies.
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4 Replies
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Approximately 2010 was when I started stumbling and felt weakness in my hips but didn’t think too much about it until my husband mentioned he noticed I seemed to be having trouble staying on my feet. At that time we were still walking about 5 miles a day, every day. In a few months, I started falling, anytime, anywhere, no warning, when walking. Just seemed like my legs were chopped off at the knees and down I went. So then came the several years of doctors and tests before I was finally diagnosed with LEMS in 2014. I have always wondered if stress wasn’t somehow involved in this as I had a great deal of it with trying to get immigrated back to the US, several properties to get sold, marital problems at the time. Have often wondered if all the stress wasn’t the catylist here!
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Dorothy, I remember discussing the ’causes’ of LEMS with a group of fellow LEMS patients back in 2018. I had been diagnosed in January of that year. Paraneoplastic triggering from cancer is easy to understand. I didn’t have that. Instead, my story is very similar to yours. When my extreme weakness and inability to walk struck, it was a very stressful time for me too. I had lost my job in the recession, was in the process of selling my house and moving to be close to family in Texas. And I was leaving behind my son with his mother. He was still in junior high school, and I didn’t want to displace him. I was staying with my sister and her husband in Texas when all this happened. It indeed was STRESS to the max.
Talking with others who also experienced stress or traumatic events when their LEMS weakness developed, it is absolutely a trigger. Doctors I’ve spoken with agree. Thanks for telling your story!
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Very interesting. My first symptoms were also not being able to walk. The first time it happened I was at a rec center watching a swim meet and I practically had to crawl through the parking lot to get to my car. I still don’t know how I made it. This was in April or May of 2019. I endured this for a few weeks and determined that I needed to see a doctor. I started seeing every doctor you can imagine, as I know you all did too, and finally found a specialist by December that agreed that not being able to walk was not normal. He was actually a POTS specialist, but took my symptoms as a challenge and by February I had a LEMS diagnosis. The only stress I was under, however, was that I couldn’t walk. Apparently it is very common that not being able to walk is a major symptom since LEMS attacks large muscles first.
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@anngailn Anngail, thanks for sharing your first symptom story! It was so interesting. It reminded me of a similar event only months before my further testing and diagnosis. It was normal for me to go to the State Fair of Texas with my camera to take photos. What’s more photogenic than a State Fair! Normally I would walk a few hours, get the shots I wanted and go home. In the fall of 2017 I was attending the fair as usual. After about an hour and a half on the grounds I noticed unusual fatigue in hips. Obviously I didn’t have a clue, but knew I needed to cut my photo shoot short and get back out to my car. I barely made it! From there it took two weeks to get past the unusual pain and weakness I experienced. That was a mere harbinger of things to come!
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