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Any LEMS (Lambert-Eaton Myasthenic Syndrome) people out there?

Posted by bpsmitty @bpsmitty, Dec 11, 2011

Any other LEMS sufferers out there?

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John, Volunteer Mentor | @johnbishop | Oct 12, 2022
In reply to @kjaffee "Good morning John. I have a great portal called MyChart. I emailed the MS specialist and..." + (show)
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Good morning John.
I have a great portal called MyChart. I emailed the MS specialist and she replied that the neuromuscular team will decide what happens next. I have my EMG scheduled for tomorrow at OHSU in Portland and should get the feedback I need then. I was wondering how definitive an EMG is for diagnosing LEMS. Thanks for your input!

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Good morning @kjaffee, Here's some info I found that may answer your question.

"ELECTRODIAGNOSTIC TESTING (EMG)​​ Increment on high-frequency nerve stimulation and post-exercise facilitation can provide confirmatory evidence ..."
-- LEMS Testing and Diagnosis - LEMS Aware HCP:
https://www.lemsawarehcp.com/lems-testing-and-diagnosis

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kjaffee | @kjaffee | Oct 12, 2022
In reply to @johnbishop "Good morning @kjaffee, Here's some info I found that may answer your question. "ELECTRODIAGNOSTIC TESTING (EMG)​​..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Good morning @kjaffee, Here's some info I found that may answer your question.

"ELECTRODIAGNOSTIC TESTING (EMG)​​ Increment on high-frequency nerve stimulation and post-exercise facilitation can provide confirmatory evidence ..."
-- LEMS Testing and Diagnosis - LEMS Aware HCP:
https://www.lemsawarehcp.com/lems-testing-and-diagnosis

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Exactly what I was looking for! Thanks for your kind assistance, John.

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spider777 | @spider777 | Oct 20, 2022

My wife was diagnosed last week at 66 years old the next step is the cancer screening.My question is what should I expect the next several steps and the future holds.
Thanks

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taosmary | @taosmary | Mar 10, 2023
In reply to @kjaffee "I have just found out I may have LEMS. I had an M/G evaluation w/reflex lab..." + (show)
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I have just found out I may have LEMS. I had an M/G evaluation w/reflex lab test done at Mayo, with the following comment: "This antibody profile is consistent with Lambert-Eaton Myasthenic Syndrome. A paraneoplastic basis should be considered, small cell lung cancer is the most commonly associated cancer." Normal readings should be < 0.02 nmol/L and my reading was .62 nmol/L. I am mildly alarmed by this as I have been dealing with a possible MS diagnosis for many years, with never a thought of cancer. Does anyone have any input for me? I have been scheduled for an urgent EMG this week. Will the EMG results provide a definitive answer as to the LEMS?
Thanks!

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LEMS is also related to autoimmune diseases, no cancer involved. I have several autoimmunes and inexplicably am barely able to walk, get up from a chair, or carry things. The pain is real.
Getting a diagnosis is difficult, since so many doctors are unfamiliar with LEMS, but Mayo is. EMG testing is another piece of the puzzle and will help complete the picture. Good luck on your journey!

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shawnamarie | @shawnamarie | Jun 16, 2023

Hi, my Mom has the LEM'S. She has been losing a lot of weight even more so now that it is getting difficult for her to swallow. Has anyone else heard of people having a difficult time swallowing? If so, have you heard of anything that can help that?
Thanks so much!
Sincerely,
Shawna 🙂

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Becky, Volunteer Mentor | @becsbuddy | Jun 24, 2023
In reply to @shawnamarie "Hi, my Mom has the LEM'S. She has been losing a lot of weight even more..." + (show)
Profile picture for shawnamarie @shawnamarie

Hi, my Mom has the LEM'S. She has been losing a lot of weight even more so now that it is getting difficult for her to swallow. Has anyone else heard of people having a difficult time swallowing? If so, have you heard of anything that can help that?
Thanks so much!
Sincerely,
Shawna 🙂

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@shawnamarie there are so many confusing things that have to be dealt with. Eating and swallowing can be particularly problematic. I would suggest that you let your mother’s doctor know as aspiration could become a problem. Aspiration means saliva or food particles that could go into the lungs causing pneumonia. The doctor may have some suggestions for your mom.
Do you think you could call the doctor on Monday? Be sure to let me know what you learn!

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shawnamarie | @shawnamarie | Jun 24, 2023

Thank you so much. I will pass this on to my Parents. She does have an apointment with a speech Pathologist to help exercise her muscles that are used to swallow as well as speak. This is where we are at now. Thank you so much.
Sincerely,
Shawna 🙂

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