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Hi, my name is Redhed2. I'm here because I have Lambert-Eaton Myasthenic syndrome (7 years) among many other issues. I have IVIG treatment every 21 days for 2 days. Im doing quite well, considering.
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Lambert-Eaton Myasthenic Syndrome
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Lambert-Eaton Myasthenic Syndrome
Lambert-Eaton Myasthenic Syndrome
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I'm new here!
Hi, my name is HeyTommy4ever. I'm here because my husband has just been diagnosed with LEMS. It's still so early we don't know if it's w/wo The real pisser is today is his 51 Birthday! I am here to learn, research, and communicate with others who have this Diagnosis placed at your table . There is nothing i will not do for him to take care of him . He saved me; this is the least.
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Hi, my name is Brendaolson.
#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #ADHD #Grief I have had 2 blood test over a year apart from each other that came back positive for LEMS and I just saw a new neurologist who did a new EMG on me I was figuring that it would have been done on my legs because there the root of my problem (have 4 EKG’s done) but he did it on my right wrist and the right side of my neck and then told me that I don’t have LEMS because the EMG says so doesn’t matter that I’ve had 2 positive blood test and 1 of them he did. so now one of my doctors wasn’t happy with this neurologist so he referred me to another one and of course there are no doctors by me that know anything about this so now I’m really confused and my appointment is 3 months away
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What advice do you have for someone searching for a rare disease diagnosis?
Between managing symptoms, juggling doctors’ appointments, and trying to find a name for what you’re experiencing, the journey to a rare disease diagnosis can be a bumpy one. That’s why it helps to have a community that “gets it” in your corner.
If you’ve been through the rare disease diagnostic process before, what advice do you have for someone just starting their search for answers? Do you have any tips for communicating with health care providers?
And remember, no matter where you are in your rare disease journey, you’re your own best health advocate. We’re cheering you on!
✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. We may use your answer in an upcoming story on The Mighty.
💡 If you’re looking for more resources on navigating life with a rare disease, check out Catalyst’s new program at Many Faces of LEMS - lemsaware
#RareDisease #LambertEatonMyasthenicSyndrome #MyastheniaGravis #LungCancer #SCLC #CheckInWithMe #Spoonie #MentalHealth #Caregiving #MuscularDystrophy #IntravenousImmunoglobulin
Many Faces of LEMS - lemsaware
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I'm new here!
Hi, my name is 24thoctober. I'm here because I would like to hear what kind of symptoms LEMS causes and how is it diagnosed.
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I'm new here!
Hi, my name is Tleyva. I'm here because I have recently been diagnosed with LEMS and am interested in finding others who have the same condition. Knowledge is power!
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I'm new here!
Hi, my name is Talbertn85. I'm here because
#MightyTogether #RheumatoidArthritis #Migraine #autoimmune diseasesurvivor #addisons #Lems
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