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

Autoimmune Diseases | Last Active: Jun 24, 2023 | Replies (27)
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@kjaffee

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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Replies to "I have just found out I may have LEMS. I had an M/G evaluation w/reflex lab..."
John, Volunteer Mentor | @johnbishop | Oct 12, 2022

@kjaffee, Normally my Mayo care team follows up and explains the results of any test I've had. There have been occasions where I've seen the test results on the patient portal before I talked with the doctor or PA about the results and been a little scared or confused. I think it might be worth a phone call or a quick message on the patient portal to request an explanation and answer to your question. Are you able to call your doctor and discuss the test?

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taosmary | @taosmary | Mar 10, 2023

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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