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Checking in!
Hey all!
I wanted to switch up the times I post a little bit to get some of you night owls since I usually post early in the mornings.
It’s been a while since we’ve done a check in on each other.
How is everyone doing?
Do you have anything exciting happening in your life? Any plans for the summer?
Any updates on your treatment plans? Questions for me?
It’s been a little quiet lately from the forums and I love hearing from you guys!
Are there any topics you would like to read about?
If you don’t want to post here and want to remain anonymous about a topic idea, please know you can always message me and I will post for you!
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2 Replies
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Hello from Vancouver Island. A few weeks back I had a scare that my ruzugi had been discontinued in Canada. A wonderful pharmacist found the company that distributed firdapse and I started taking it about 2 weeks ago
I find the drug fairly similar and I may have a bit more strength.
We are having a heat wave here and I do find it reacts negatively to LEMS. I stay out of the sun and I am lucky enough to have an air conditioner in my home.
If there is anyone out there in British Columbia with this disease I would like to connect.
Thank you for your newsletter.
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@joanneevans I’m glad you were able to quickly switch to Firdapse with the issues at Health Canada. If you know of others, please advise them to do the same!
Heat is bad for LEMS and this is my worst year yet. Cold showers, cold vest, and the swimming pool are my friends!
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