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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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@colleenyoung

@emonty, welcome. You'll notice I moved your question asking about a doctor specializing in Lambert-Eaton Myasthenic Syndrome (LEMS) to this existing discussion. I did this so that you connect with others like @mareeinga

I'm not familiar with a specialist in Ft Myers. But you may wish to inquire at Mayo Clinic in Jacksonville. Here's the contact information for all Mayo Clinic locations: http://mayocl.in/1mtmR63

Emonty, has your diagnosis of LEMS been confirmed? Are you in treatment?

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Replies to "@emonty, welcome. You'll notice I moved your question asking about a doctor specializing in Lambert-Eaton Myasthenic..."
emonty | @emonty | Mar 3, 2022

Thank you for asking. It is my husband who was diagnosed a couple weeks ago. . We have a neurologist but was wondering if anyone on this forum might know of a specific specialist. We are currently in treatment which consists if iciv, prednisone and azathioprine. Praying that this handles future symptoms.

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emonty | @emonty | Mar 8, 2022

Yes - Wes was officially diagnosed and began treatment mid Feb. he received 5 days of 5 hour Ivig’s, started imuran and prednisone. He will continue the drugs and is receiving ivig treatments one day a month. He is responding favorably thus far. We are keeping the faith for the future!

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