Hey Rene! We are SO GLAD you found us! It warms my heart that I’ve been able to help you a little bit! You’ve also given us some really helpful information about nutrition!!

Hey Rene, thanks for sharing! I always love hearing how people find others in this community. And I just sent you a message. Have a great day!

While searching online, my wife found a support group for people with LEMS. After attending my first meeting, I realized that I was not alone—which is exactly how I had felt before finding the group. Furthermore, I benefited from the recommendations and helpful tips provided by a member of the medical community (Ashley)—such as avoiding…

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One of the hardest parts of living with LEMS isn’t just the symptoms—it’s the feeling of being “the only one.”

When you’re diagnosed with something rare, it can feel isolating, overwhelming, and even a little scary at first.

This forum is about connection.

We are here to make you aware that you’re not alone! Each member here… Read more

Hey Tom!

Thank you so much for responding!😀

I also struggle with the unpredictability of LEMS symptoms and how fast symptoms can go from one extreme to the other. I think many others here share your frustration there.

I agree that sometimes LEMS symptoms are out of our control, but sometimes they are also influenced by our emotional and…

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Hi Ashley

Great presentation Friday the 27th, thank you. I’m learning how to reply to topics presented by yourself and others.

I read your topic regarding what lately is your biggest challenge. Lately and for some time now, is the unpredictably of LEMS symptoms. Initially I thought I could relate higher LEMS symptoms to my physical…

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Hello, LEMS community!

I enjoyed this column by Anna Jeter. This is from Pulmonary Hypertension News, one of our sibling sites. Anna writes about many of the frustrations she’s had with medical dramas in the past, and how they are often woefully inaccurate. As a patient with pulmonary hypertension, she stopped watching these shows for a long… Read more

Great call with everyone on Friday! Sorry if you couldn’t make it, but we hope to see you at the next one. For those who came, is there anything you would like to continue to discuss here? @Deborah Carpenter @Tom Short @Alan Stone @Jamie L Sanderson @Ashley

I love this topic! I think this resonates with anyone in rare disease communities.

One of the hardest parts of living with LEMS isn’t just the symptoms—it’s the feeling of being “the only one.”

When you’re diagnosed with something rare, it can feel isolating, overwhelming, and even a little scary at first. This forum is about connection.

We are here to make you aware that you’re not alone! Each member here understands… Read more

Living with LEMS makes “rare” more than just a word—it shapes our experiences, our challenges, and our resilience.

How has having LEMS shaped your life?

What do you wish more people understood about LEMS?

Hello, LEMS community!

Rare Disease Day took place at the end of February. This is a nationally recognized event to raise awareness for a wide range of rare disease communities.

Bionews, the parent company of this website, put together a page and a series of videos. Contributors for this are from different communities, and they discussed… Read more

Living with LEMS can be exhausting—not just physically, but emotionally and mentally too. Some days, the symptoms, the unpredictability, or the limitations hit harder than others.

This thread is a place to let it out. No pressure, no judgment—just an open room where you can say what’s been wearing you down lately. Just honesty,… Read more

Living with LEMS means every bit of progress counts—no matter how small it might seem to someone else.

As we step into the new year, it’s the perfect time to celebrate the quiet victories, the unexpected, good days, and the moments where we felt just a little stronger or more hopeful!

This discussion is a space to share those… Read more

jamielsanderson6179@gmail.com

For many people living with LEMS, finding the right types and amounts of movement can be a challenge. We have to consider balancing strength-building with fatigue, mobility limitations, and dealing with unpredictable symptoms.

But even gentle or low-impact activity can make a meaningful difference in flexibility, stamina, and mood. As we… Read more

I was diagnosed with LEMS in Feb 2023, I am now 73 years old. I started 100mg of firdapse as soon as it was approved by the FDA. In Feb 2023. I took 80mg of Firdapse daily. My frequency has changed over time. I set my alarm for 6,9 am, noon, 3pm and 6pm. This worked for some time. I took my 6am dose and stayed in bed for about 1 hour…

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Hello Ashley. 4 pm EST.

Hi @Tracy

I appreciate your feedback! I posted this post back on Nov 13, but didn’t get any feedback from anyone until today. Kevin and I decided on the time of 10 am since we didn’t hear from anyone about their preference.

For now, we will be keeping the time as 10 am EST and see how it goes. Thanks!

10 am eastern = 7 am western

4 pm eastern = 1 pm western

11 am eastern = 8am western

And no-one wants to get on zoom at 8am

4 is a better time for getting (zoom) lems people across the country because of time zones

I’ll make time , if I had to pick one of the options, I would say 11am, but I will go with time is best for all

I’ll make time, any time. Calling my dentist right now to reschedule my appointment.

Hi Ashley and Kevin,

I read your note, that answers my question.

We’ll see each other soon.

🙂

For many people, navigating disability benefits or workplace/school accommodations becomes an important part of managing life with LEMS. But the process of applying for help—whether through Social Security Disability (SSDI), workplace accommodations (ADA), or educational supports (504/IEP plans) —can be confusing, frustrating, and… Read more

As we move into 2026, we’re grateful to continue gathering for our LEMS Support Zoom meetings once monthly on Fridays at 10:00 am EST.

The dates are as follows:

January 23rd
February 20th
March 27th
April 17th
May 15th
June 12th
July 10th
August 7th
September 4th
October 2nd
November 20th
December 18th

Due to last… Read more

Happy New Year, LEMS Family!

As we say goodbye to this year and welcome the next, I want to take a moment to recognize the strength, honesty, and compassion this community has shared day after day.

Living with LEMS brings challenges that most people never see—but here, we show up for one another, learn from each other, and celebrate… Read more

Happy holidays, LEMS family!

As we celebrate the holiday season, I want to take a moment to send love, strength, and warmth to every member of our Lambert Eaton News community. Living with LEMS can make this time of year a mix of joy, exhaustion, and everything in between—but you continue to lift each other up in the most inspiring… Read more

Hi LEMS Friends!

Just a reminder that our monthly Zoom social is this Friday, December 19th, at 5:30 pm EST!

As always, you can comment here or send me a private message with any topics that have been on your mind! Looking forward to seeing you all!

You can access our meeting here at 5:20 pm EST! 🙂

If you’re unable to make it this… Read more

Firdapse (amifampridine) is one of the few FDA-approved treatments specifically for LEMS, and for many patients, it’s a game-changer in restoring muscle strength and improving daily function.

But it’s not always simple. Dosing, timing, and side effects can vary widely from person to person—and finding the right balance takes… Read more

Caring for someone with Lambert-Eaton Myasthenic Syndrome can be both meaningful and overwhelming.

Whether you’re a spouse, partner, parent, sibling, or close friend, you’re navigating a rare and complex condition while trying to offer emotional and physical support—often without much guidance.

This thread is just for you: the… Read more

As we head into Thanksgiving, I want to say how truly grateful I am for each of you in this community!

Living with LEMS (or loving someone who does) isn’t easy, but the way you all show up here—with honesty, vulnerability, encouragement, and kindness—turns this forum into so much more than just a place for information. It’s a family.… Read more

Hey all! Does anyone have an opinion on this?

Tagging my usuals @Deborah Carpenter @Rene @Alan Stone @Jamie L Sanderson @tom-sharpe

Hey @dale-curtiss Thanks so much for sharing this awesome list! I KNOW it will help someone out! 🙂

<div>This professional article provides “more” steps than my first reply.</div>

…

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Prepping for a specialist appointment = Agenda/Research

1. Agenda. Always make a list of questions and observations. This is needed to help “YOU” remember everything. It is especially needed when the doctor distracts you during the office visit. Do not let the doctor out of the room, until ALL YOUR important items are discussed.

2. …

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Hi LEMS Friends!
Just a reminder that our monthly Zoom social is this Friday, November 21st, at 5:30 pm EST!

Kerri Dodson, the nutritionist, has graciously agreed to attend this meeting for those who missed her presentation and to answer any questions you guys may have!

If you have any questions for Kerri, please send me a message… Read more

Hey @Tim

Thank you for sharing with us! I’ve heard that cellcept can take a while to work too!

It’s awesome that you aren’t experiencing any side effects yet! I hope it stays that way for you and that you can feel it’s affects soon (And that it helps you!)

Hi, I’ve been on CellCept for a month. I’m on IVIg also (2 years) and have experienced significant improvement on IVIg, but my new doctor wants to see if I can have improvement on an oral drug, which I am very interested in!

It’s too soon to say if CellCept has helped, but at least I can say I’m experiencing no noticeable side effects.

Hope I…

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Hello, LEMS community! Hope everyone is having a great week.

When prepping for an appointment with one of your specialists, different factors come into play. You may be seeing a specialist for the first time, or dealing with new symptoms that you want to discuss. It helps to have a plan going into the appointment, so that you ensure that… Read more

Hi Lee,

I’ve heard that warm baths/hot tubs can take a lot out of some people, while they help others! A soak in a hot tub also helps me as do hot showers but everyone is different!

Hi Lee,

This is a good question to ask your neurologist! I cannot advise how much magnesium you should be taking!

Hi @Lee

I’m not sure if there was a miscommunication, but our next meeting is not until November 21. We had our October meeting last Friday the 24th. We have one meeting a month!

We do not record our meetings due to privacy for our members!

Also, we are currently putting together an e-mail list to send the link out to avoid this issue…

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Requires a password. 5:24 PM Oct 28, day of the zoom meeting. Please redo this meeting or save it so we can view it without password.

Hey everyone, apologies to anyone who had trouble joining on Friday. We kept this meeting short anyway. But to avoid future issues, I will send an email invite for the next one. Sometimes tech issues are unavoidable, but hopefully this will resolve them in the future. Hope everyone had a great weekend!