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Wife of Husband with LEMS
Olá! 👋 Thank you for accepting. Im from PT and my husband was diagnosed with LEMS almost One year ago. Until he got his diagnosis we had a though time as we were speaking with the end of my pregnancy and then the newborn and we also had another toodler. He got admited to the hospital almost with no body movements and love eye movements, also deveres mouth dryness that made him cough and couldnt drink liquids. Having a diagnosis and a treatment made him focused, but he is still dealing with medication adjustments ( thank God for Firdapse) and some lows, and life as been a little difficult still.
He is on azatioprin since November but the docs says he needs another full month yet to see the results.
Its a new reality that we are still struggling to real with.
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3 Replies
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Hi @AngieHeart
We’re so glad you found us! I’m glad your husband was able to get a diagnosis and start Firdapse! It really is a godsend for a lot of us here!
Many of us are also on immunosuppressants like Azathioprine as well weather its CellCept, Rituxan or Imuran.
We have monthly zoom “support group” meetings and have one coming up on April 19th at 5pm EST! We would love to meet you and and your husband!
Here’s our schedule and the link to join the call: LEMS Zoom Social Dates for 2024! – LEMS Community Zoom Socials – Lambert-Eaton News Forums (lamberteatonnews.com)
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Thank you so much! We will definitely be there!
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@AngieHeart Awesome! Looking forward to “meeting” you both there!
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