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Do your LEMS symptoms vary over time?
How do you feel your LEMS symptoms vary day to day?
I often can feel quite a difference in my LEMS symptoms. One day I may have more hip weakness than another. My LEMS voice appears and disappears, often within hours.
Tell us how your LEMS symptoms vary.
Poll (please answer in comments)
1. Symptoms feel relatively stable day to day
2. vary but it’s hardly noticeable.
3. vary moderately from day to day
4. vary dramatically day to day -
4 Replies
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I’d say #3, some days are better than others. I wish I could determine some cause and effect for which I get, that would be great.
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Bernie I am probably a 3 too. Sometimes it’s kind of explainable, but often a mystery. That’s LEMS.
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Hey Bernie, just checking in. I remember you report moderate day to day changes in your LEMS symptoms, as do I. Can you refresh me on your treatment plan?
I’m on Mestinon, Firdapse, and IVIG.
I seem to recall you are not on Firdapse or IVIG, but not sure.
Let me know!
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Definitely #4 depending on activity. Some days I can walk and others I can’t if I’ve done any activity.
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Do you have any reasons you’ve thought of that cause these big swings? Me it could be a missed dose, the last week of my IVIG cycle, an overactive day, or excessive heat. If you think of what may be causing yours, let us know.
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