Hey! Thanks for sharing! I also have some overlap, Sjogren’s, autoimmune anemia, and Hashimoto’s along with my LEMS. I was diagnosed with Hashi first, then LEMS and Sjogren’s a few years later.

Living with LEMS can come with its share of challenges, so let’s take a moment to focus on something positive!

What is one thing that made you happy last week?

It could be something big, like reaching a personal milestone, or something small, like enjoying a cup of coffee, spending time with family, getting outside, or simply having a good…

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I have Sjogren’s, Myasthenia Gravis, Rheumatoid Arthritis and Pernicious Anemia. My Sjogren’s was diagnosed before my Myasthenia Gravis. A colleague and friend of mine (we are both physicians) recommended I be tested for Lambert Eaton several months after being diagnosed with Myasthenia Gravis. Have both Myasthenia Gravis and Lambert Eaton…

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I stay in as much as I can to avoid the heat and try to wait until evening to go outside. If I have to be out, I use neck fans, wear a hat, use cooling cloths, and keep water handy.

I’ve learned to stop being so hard on myself because LEMS affects my body daily.

I have been on Zepbound for almost a year and have had no side effects. I am very pleased with the weight loss (~100lbs) since it is difficult to exercise.

https://apple.news/AohdGoeXHRO6gaMAsb0d0Dw

 

Saw this article. Doesn’t mention Firdapse, but it does say the GLP-1 drugs ineract with drugs that are taken a specific time., i.e. Birth control cancer drugs etc…

Woud like to know more myself about the interference before starting on a GLP-1…

A recent case report highlighted a woman who was diagnosed with both Sjögren’s disease and LEMS. (https://lamberteatonnews.com/news/overlapping-symptoms-hide-second-rare-autoimmune-disease-case-report)

Because the two conditions can share symptoms—such as weakness and dry mouth—some symptoms were initially attributed to Sjögren’s before further…

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Hey @trisha

I’m sorry heat makes things worse for you too! I also try to stay out of the midday sun. I also swear by electrolytes, although I use the “Just ingredients” brand and mix with water myself. The extra sugar in gatorade is a little much for me personally! Just something that may help you too!

I live in South Florida. I stay inside and cope with the heat outside by only going out after the sun sets. I attend medical appointments in late afternoon to avoid the mid day sun. The sun is brutal otherwise. Ice water and Gatorade are good for staying hydrated. I use sunscreen on my skin and avoid unnecessary exposure.

Last month LEMS columnist wrote an article titled  “The lessons I’ve learned from my daughter’s journey with LEMS.”

Like Lori and her daughter Grace, I have learned a few lessons thanks to my journey with LEMS!

It has definitely allowed me to have more gratitude for the good days and more patience with myself (and sometimes others…

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Thanks for sharing your experience with us!!

Well :–)) Living is Tucson AZ makes it difficult to avoid the HEAT ;–0 Not having lived anywhere else since being diagnosed two years ago it’s become “normal” and I do not see much more impact from the heat that before LEMS — but our swimming pool helps a little and the AC is a life saver as long as one stays inside:–)) I still do…

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Hello, LEMS community!

Across the United States, people are experiencing massive heat waves. This can be especially difficult to manage while living with LEMS.

Do you have any tips for managing the heat? How does it affect your LEMS symptoms?

Glad to help where I can! 🙂

Hey all!

Hi everyone, you may have already received the invitation, but I wanted to make you aware of a new group within the forums called Lambert-Eaton Conversations! This group exists to give people in the LEMS community a supportive place to connect, ask questions, and share experiences. There is no pressure to post, but I wanted you to…

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Thank you !! I did some searching myself with little expectation. Asking the question here was just one of the many possibilities that I was following ( again with little expectations ).

We do what we do as best we can in this “war” with LEMS !!

Thanks again !!

Hi @dicynd I do not have any knowledge about GLP-1s specifically with LEMS patients and I wasn’t able to find any information on a google search. I would definitely speak to your neuro as they may have some knowledge that pertains to LEMS or even myasthenia in general with GLP-1s. Sorry I don’t have more information for you

Thank you for your input Richard!

I plan to talk to my GP and Nero. about it BUT before I do, I would like to have a bit of possible knowledge of what other LEMS patients MAY have experienced. I find that it is helpful to have as much info as possible before I talk to them.

Hi Cpurich,

I have LEMS and I am satisfied with the care that I am getting from the Prosserman Family Neuromuscular Clinic at the Toronto General Hospital (https://www.uhn.ca/Krembil/Clinics/Neuromuscular_Clinic).

Soon after I started experiencing pronounced symptoms (mostly leg and arm weakness), my family doctor referred me to a…

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Hey @Cpurich

I’m glad you found us, welcome to the group!

I’m so sorry to hear your mom hasn’t responded to the treatments you have tried thus far for LEMS.

I think we have a couple of different members from canada.

I know @rjp is in Canada, so maybe he can offer you some assistance!

Hmmmm that’s really interesting! I’m A+! I could make a poll in our group and maybe we could see if there is a correlation!

Hi everyone, I’m a family member looking for some feedback from other Canadians. My mom was diagnosed last year with LEMS without cancer. She hasn’t responded to treatment, including medication , IVIG, and now most recently 6 rounds of therapeutic plasma exchange. She’s located in Thunder Bay, ON which is a smaller centre of course and…

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Another thing to investigate is thr RH factor. My Mom, myself and my sister are A+. We each have or had poor health with autoimmune diseases. My brother in is A-. He never has any illness and no autoimmune illness. I wonder what the RH factor is for the LEMS population? Maybe LEMS could be treated with gene therapy or DNA modification. What…

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Wow @Trisha thats an excellent observation I hadn’t realized! I am actually mainly British, with Irish and some German. Hopefully one day this is something they will explore!

Thank you so much for your input @carol Oliver

I’m really glad it was an easy process for you!

Thanks for the recommendation!

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