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Who has helped you during your LEMS journey?
When you have a chronic illness, having a support group is really important, especially during times when we aren’t feeling our best.
@lorildunham’s most recent column is about someone who made a big difference with a small gesture in both her and her daughter, Grace’s life, and LEMS journey.
Who has helped you along the way? What are some things that have made a big difference for you?
For me, The first year I started getting IVIG my Dad would accompany me for the day and take me out for lunch after. It was nice to be cared for and know I had someone I could depend on during a time when I was my sickest.
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1 Reply
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What is IVIG? I’ve seen several people reference this. Is it often recommended as part of a LEMS treatment plan?
Newbie here! I’ve only been on Firdapse for 10 days.
Thanks!
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Hey @juliamunson !
IVIG is IV Immunoglobulin therapy which is a common treatment for LEMS.
Our website Lambert-Eaton news has a section for treatment options for LEMS, but also has a specific page for IVIG therapy.
To sum it up, IVIG is a collection of human plasma from donors that contains antibodies from hundreds of donors. Receiving these antibodies “tricks” our body and they stop making antibodies that cause LEMS (Calcium Channel Antibodies) which improves our condition and muscle weakness. Sadly, our body breaks down these antibodies just like everything else so treatment has to be continuous and about every 3-4 weeks.
Here’s some more general info about IVIG if you want to read more about it and the many other conditions it treats.
Hope this helps!
I would definitely inquire with your physician about IVIG therapy.
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