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Hi! My name is Linda Brooks with Lems
I am 74 years old and also have
Copd. My journey started with numbness in both feet. Referred to a neurologist last fall. After emg and three blood test I was diagnosed. My blood test for calcium channel antibody started at .49 raised to .69 and recently increased to .94. This increased over a 9 month period. My major issue is major fatigue also due to copd. Just started firedasp and not seeing much benefit at yet. Taking 10mg three times a day. Perhaps need to increase it. Glad to be part of this group. So very confused right now and somewhat in denial. -
1 Reply
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Hey @lindabrooks !
Thanks for sharing your story with us!
Do you know if your calcium channel antibodies were P/Q or N-type? LEMS patients have have both or one of them present, but each antibody produces a little bit of different effects. For example, patients with N-type (like me) are usually younger and have more symptoms related to the autonomic nervous system/ dysautonomia.
How long ago did you start Firdapse?
I also have pretty bad fatigue, but IVIG therapy has given me a lot of help and is a common treatment for LEMS.
Here’s some info on IVIG therapy for LEMS patients
There is a lot of other information on other treatment options here
Hope this helps! Looking forward to hearing back from you! Keep us posted!
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