Hello! I’ve added you to the email list. Once our next meeting is scheduled, you will receive an invite. In the meantime, you’re welcome to explore this forum and join in on conversations here. Welcome!

Hi Ashley,

You can add me.

Thank you.

I am reading 4 3 2 1 by Paul Auster; The Biggest Ideas in the Universe, by Sean Carroll; Pedro Paramo, by JUan Rulfo; Political Order and Political Decay, by Francis Fukuyama.

I am not sure any of these would be a good recommendation for an infusion day…🤨

Hi,

I have the same question as @bveil626 – is this group still active? How can one participate? Thank you

Hi! Yes, our next meeting is November 20th at 10am EST! Usually we meet for about an hour each month! If you message me your e-mail address, I can send you the google link/invite!

Is this group still going on?

I have been watching Deadliest Catch. I had not seen it until recently and it draws you in ha

As LEMS patients, most of us deal with muscle weakness on a daily basis. 

I’ve always had a hard time explaining to others what this feels like and how it affects me day to day.

Recently, I came across an article that I thought explained it pretty well. The article is about muscle weakness with MG, but I still think it fits. 

“For me it…

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Hey @Mary Ann Camporeale Thanks for sharing with us! Sorry you’re also dealing with multiple autoimmune diseases. Welcome to the club!

Hi I also have Sjogrens diagnosed in 2006 and LEMS diagnosed in 2008. In addition Hashimotos, Raynauds, AI Hepatitis. MGUS.

What TV show are you binge-watching, what book are you reading, or what podcast or music has been on repeat lately?

I’m always looking for new recommendations, especially for my infusion days!

Lately I’ve been loving listening to Noah Kahan. I find some of his songs to be quite cathartic. 

Share your favorites! 🙂

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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