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New chapter in my life
Hi, my name is Bernie. I recently started a new chapter in my life, that of LEMS. I retired in early 2019 and was living a fairly active life. 2020 came along and was going to be pretty great. Then, in late January my wife was diagnosed with her second round of breast cancer. Shortly after, a pandemic also hit. I spent most of last year taking care of my wife, getting her through all of the tests, surgeries and chemo. There were many challenges due to her overall health and the pandemic. I took small breaks to go out hiking with some other retired fellows but invested my time largely into my life partner. In the fall, she was feeling a bit better and I started branching out and increasing my activities. Things were looking up, my activity level increased and life was pretty good.
Around Christmas time, I started noticing that my thighs weren’t reacting the way I was used to, but I chalked it up to being a bit inactive or out of shape. In January of this year, I tried going out to hike with my guys and I struggled to finish a fairly easy journey. I had also started noticing other, seemingly unrelated symptoms. My salivary system didn’t provide as much moisture as before and it became hard to eat some things. Overnight, my bathroom trips multiplied. Late in January I had a couple of low blood pressure episodes where I passed out briefly after standing up. Things got a lot more serious after those, both my symptoms increasing in level and my health provider starting tests. Suddenly, I could no longer walk more than about 500 feet. I started losing weight rapidly. My saliva stopped pretty much completely. I fought against these things, eating more and richer food, trying to stay hydrated, using all of the OTC dry mouth treatments etc. I underwent various lab tests and samples for months, totalling over 80 tests. I was referred to rheumatologists, physical therapists, pulmonologists, internists, cardiologists and a neurologist. The neurologist referred me to a specialist neurologist that did a thorough examination and let me know he was concerned about ALS. However he wanted to do another EMG (one had already been done) because he wanted to be certain. On June 21 of this year, six months into this journey I was diagnosed after that EMG with NT-LEMS.
Now I was pretty relieved that it was NOT ALS. However, I knew just about nothing about LEMS and I was anxious about having an incurable neuro-muscular disease. I was started on Mestinon, which helped with some of my nerve and muscle symptoms. It did not help with any of the autonomic issues though. Because I tested sero-negative for the Anti-VGCC, the health provider is hesitant to provide me with 3.4 DAP. I am supposed to see my neurologist in a week or so and discuss my prognosis and treatment plan. My weight has mostly stabilized-I lost 25# since the first of the year-and I am working with my PT tech to try to rebuild some core strength.
Unfortunately, my plans for retirement included a lot of outdoor activities, or things that involved physical labor. Motorcycles, bicycles, cars on racetracks, machine tools and yard and home projects were slated to occupy my time. Now, just about all of those things are not very achievable. I need to sell off a bunch of toys that will not be able to be used. The good news is that my wife is in decent health again and is able to help me with my recovery. I am rethinking my retirement, trying to prioritize different things that I can accomplish. I know that if I want to travel, I will need to regain a lot of my mobility so I am working hard on that. I am hopeful that I can get treatments that will help with my salivary issues and other autonomic troubles so I can have a reasonable quality of life.
Thanks for listening.
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1 Reply
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@bernie Thanks for sharing this story. There’s a lot to unpack. First, it’s good to hear your wife is doing much better.
I too started with Mestinon which did help. Then we added immunoglobulin infusions (IVIG), and finally Firdapse, or amifampridine.
Amifampridine is the only FDA approved med for LEMS at this time, so hopefully you will get this into your treatment plan.
Living with LEMS is an ongoing learning exercise in what one can and can’t do. Hopefully, when you get on a good treatment plan, you will be able to do more. But LEMS will always be a consideration.
Again, thanks for telling your story. It’s early, so keep your mental outlook up.
And Ashley will look forward to meeting you at our Meet and Greet soon.
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