season 2 episode 18

It is frustrating when people say you just need to get up and walk and eat right. If it was that easy I sure would not be in the shape I am in.

Yes, since I was no longer able to work, I applied for SSDI about a year after my Lems diagnosis. I find that when you call the social security help line that they are very helpful.

I did receive disability benefits until I reached the regular social security age.

I don’t recall anything complicated. Just be patient and follow all the directions.

Good Luck

Hello! Thank you for sharing, and sorry you are struggling with this. Have you been able to consult with your care team about this?

Unfortunately, I have gained 45 pounds since being diagnosed with LEMS and have not been able to take it off through dieting. Not being able to exercise is big factor !! That has left me thinking about GLP-1.

Has anyone used it or have any information about it’s use with LEMS.

Thank you !!

Hey Trisha, thanks for sharing!

The surprising thing that I see when looking at these statistics is there is no mention of a need to investigate the genetic similarities of the German population and the British populations combined. My Father was German and my Mother was British. I have Lems. My fathers family has Multiple Sclerosis, lymphoma and diabetes. My mother’s family…

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I watch a medical drama on Paramount. The show is called Watson.

Season 4, episode 6 is about a patient initially misdiagnosed with gravis but ends with LEMS. It was a little misleading. Kind of like oh thank goodness he doesn’t have myesthenia gravis, he only has LEMS. It was like saying thank goodness he doesn’t have Leprosy instead it’s only…

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Lambert-Eaton Myasthenic Syndrome (LEMS) is a rare neuromuscular disorder. While exact numbers are hard to determine, some regions report higher diagnosed cases due to larger populations and more robust healthcare systems.

Estimated LEMS Cases by Region:

United States – Among the highest numbers of diagnosed cases worldwide, roughly… Read more

Getting diagnosed with LEMS can bring a lot of emotions—relief, fear, confusion, and uncertainty all at once.
Many of us have learned things along the way that we wish someone had told us earlier.

This thread is a place to share those insights with people who are just starting their journey.

Some examples might include:

It’s okay… Read more

Thank you to everyone who came on Friday! Are there any topics that anyone wants to discuss right now? How is everyone doing?

If you’re new to Lambert-Eaton Myasthenic Syndrome (LEMS), you probably have a lot of questions.

This thread collects some of the most common questions members ask.

Feel free to add your own experiences or ask new questions—our community is here to help.

** Frequently asked questions about LEMS **

1) What is LEMS?

LEMS… Read more

Hey @Kevin Deihl Sorry you are also struggling with firdapse! I wish there was something we could do to change the scenario there, I know it’s so frustrating! I was never able to try Ruzurgi and have been off firdapse for a few years now.

If you’ve recently been diagnosed with Lambert-Eaton Myasthenic Syndrome (LEMS), welcome!!

While we’re sorry you have a reason to be here, we’re really glad you found this community.

Being diagnosed with a rare disease can feel overwhelming. Many people have never heard of LEMS before their diagnosis, and it’s normal to have a lot of… Read more

Hey Ginny, I have the same issue with Catalyst as to I did so much better on Ruzurgi than Firdapse. Catalyst once offered me a position where I would share my experiences while taking Firdapse and I told them that I probably would’t be a good candidate. I went from being on Ruzurgi and 4.5 mg of Prednisone to Firdapse and 20 mg of Prednisone.…

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Hey @Spike

Thank you for your feedback! It sounds like an easy process for you, although a little time consuming! I’m glad you were able to qualify!

After being told at my local SS office in January of ‘24 that I I was not eligible, I applied online for SSDI. the website states it would take approximately 265 days to process my claim

263 days later I was approved, with a payment going back to when stopped working. There was no problem that I am aware of getting approval, it just takes time…

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Hey Ginny, thanks for sharing! It’s very frustrating finding the right treatment plan, and also managing symptoms. I’m sure that many people here can relate.

For me, the most exhausting issue with LEMS is that Ruzurgi worked so well, and Firdapse did not. I’m still struggling and needing to use my walker and scooter where I didn’t have to for years when I was on 3,4 DAP/Ruzurgi. Catalyst continues to say that it will not produce Ruzurgi, and it’s challenging emotionally to know it exists, and I can’t get it.

Hey Tracy! Yes, we recognize that we can’t accommodate everyone, but we try to determine a time that works best. We might try different times down the road, but for now, this time works best for the majority of people. Hope to see you at one soon if you’re available! But also, anyone is welcome and encouraged to continue posting here.…

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Thanks for your input Tracy! At this time, we are sticking to 10!

For many people living with Lambert-Eaton Myasthenic Syndrome (LEMS), there may come a point when symptoms like severe fatigue, muscle weakness, mobility challenges, or treatment schedules make working full-time extremely difficult.

When that happens, some people begin exploring Social Security Disability Insurance (SSDI).

Because LEMS is… Read more

4 works better for me

Just a reminder that the next meeting is Friday morning at 10 AM Eastern. If you need the invite, just message me and Ashley. Hope to see you there!

For many people living with Lambert-Eaton Myasthenic Syndrome (LEMS), symptoms like muscle weakness, severe fatigue, mobility issues, and fluctuating function can make working full-time extremely difficult.

When this happens, Social Security Disability Insurance (SSDI) may become an important option.
Because LEMS is rare, the process can… Read more

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