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Reading Forum and Facebook posts, the struggle to get an early diagnosis of LEMS is a big topic. And it should be! When we get the diagnosis, the mystery is solved. A treatment plan can be developed. Because 50-60% of LEMS can be triggered by a cancer, screening fit it can be started. So yes, getting the diagnosis is a big deal. Be proactive…[Read more]

Yes, that fourth week going into my IVIG immunoglobulin infusion can get “interesting”. As my friend Dawn reminds me, the life of antibodies we receive through IVIG are good for about three to three and a half weeks, generally. This holds true for me. My IVIG schedule is set exactly 4 weeks to the day on the calendar. So every fourth Wed…[Read more]

Good morning all!

I know many of us had an extremely long period of time between when we first started experiencing LEMS symptoms and when we were actually diagnosed with LEMS.

Lambert-Eaton News posted an article back in January about the possible emotional responses to a LEMS diagnosis.

I found this article helpful to know that we…[Read more]

Hey all!

I’ve been slowly checking out all of the updated tabs on Lambert-Eaton News and found that there is now a tab dedicated to “eye problems in LEMS.”

I know many of you have asked if this is a typical LEMS symptom in the past.

I was not aware that droopy eyelids, double vision, reduced vision, dry eyes, abnormal eye movements,…[Read more]

Thanks to the research and interest from co-moderator @ashleygregory757, I’m now managing the daily grind of pill taking better than ever. We’re using the app, Medisafe. And I do have lots of pills!!!
Previously, I was setting daily alarms inconsistently on my Apple Watch. The VA doesn’t have auto refill so I would need to keep a sharp eye on th…[Read more]

Hey all,

Happy Friday! I am really looking forward to a “lazy” weekend as my week and weekend has left me exhausted.

As I mentioned last week, I spent last weekend in DC with my best friend. We walked and rode the metro everywhere, so I did double the amount of steps I normally do per day.

I have tried to lay low after working this week…[Read more]

Here’s a simple strategy to manage the stress of Lambert-Eaton and this past year of pandemic isolation. Get outside. Don’t stay inside all the time. Walk, drive, take a stroll, go sit in the backyard or walk your neighborhood. If you run into someone else, smile and offer a greeting. Who knows, a conversation may break out! You may act…[Read more]

Those of us with LEMS are “special” people, not in an elevated sense of self, but in our antibodies profile and how we alter it with immunosuppressants or immunoglobulin therapy. I sense this muddies the picture for us when I comes to getting the Covid-19 vaccine. Did it work? How much did it help? There seems to be no good, scientifically bas…[Read more]

Good morning all!

We’ve had quite a few new members and I thought it would be fun to do an updated role call!

I think it would be really cool if some of you are close to each other and can meet up in person!

So, can everyone post their location on this thread, and if you want, you could also post your LEMS story and/or the year you were…[Read more]

Click here to read Lori Dunham’s column about the underlying grief that chased her as she desperately sought answers for her daughter’s worsening LEMS symptoms.

Can you relate to Lori? How has grief marked your experience with LEMS?