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Alan Stone replied to the topic Getting weaker and weaker on Firdapse in the forum Using Our Forums 1 week, 2 days ago
Ginny, I also am getting the impression that Firdapse efficacy is slowly waning. Been taking 20 mgs 3 times daily since 6/18 per my neurologist’s suggestion. I feel like 4 times daily might improve symptoms. I intend to suggest this to neuro on 05/23 ay appointment.
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Alan Stone replied to the topic LEMS walking (video) in the forum Living With LEMS 4 weeks, 1 day ago
The Miami Dolphins have a wide receiver last name Waddle and when he makes a great play his teammates gather around him and do the “waddle” dance. I’ve been doing that dance since I was diagnosed in 2016.
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Alan Stone replied to the topic Would you switch to taking 100 mg daily of Firdapse? in the forum Amifampridine (Firdapse and Ruzurgi) 1 month, 1 week ago
I am on 60 mgs/day, (Firdapse) only because my neuro thinks I’d be flirting with seizures to go higher. Personally, I’d like to think I could go to 80 mgs, (or 100 mgs) when evening activities might require a degree of muscle coordination.
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Alan Stone replied to the topic Does stress affect your LEMS? in the forum Living With LEMS 2 months ago
Definitely, my dealing capabilities are affected by the efficacy of the Firdapse. Just ask my wife. She’s told me my coping abilities handling frustrating situations seems to be at a minimum when my Firdapse is wearing thin. I get overwhelmed easier. That, coming from retired airline pilot.
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Alan Stone replied to the topic Medical Marijuana – Yes or No? in the forum Living With LEMS 10 months, 3 weeks ago
My neighbor, a certified psychoanalyst, advocates for CBD for pain and sleep issues, but I have not tried it yet.
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Alan Stone replied to the topic Aloha! My name is Alan and I am still in the Diagnosis phase… in the forum Introductions 1 year ago
Alan, I wondered if sooner or later another Alan would join this forum. Guess both of us will have to include last names. Welcome. This platform has been a Godsent for me, as LEMS is so rare. The EMG was what confirmed LEMS in my case. Prior to actual confirmation, most of us have gone through years of unhelpful advice and diagnosis. It is truly…[Read more]
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Alan Stone posted an update 3 years, 2 months ago
I reside in Miami, Florida, USA.
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Alan Stone posted an update 3 years, 3 months ago
Ashley, many thanks for the article on “screening for SCLC…” Subject matter was spot on. Thank God for this venue.
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Alan Stone replied to the topic unwanted side effects in the forum Amifampridine (Firdapse and Ruzurgi) 3 years, 3 months ago
Thanks, Price for your comments. I neglected to include that I’ve been using a CPAP since 2008, but the onset of the LEMS was insidious and caused confusion as to what came first, (It took quite some time to get a correct diagnosis). I concur with your “LEMS crash” and “adventure” comments.
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Alan Stone posted an update 3 years, 3 months ago
Had my bi-annual appointment yesterday, (2/17/20) with neurologist at U of Miami Health. He and I have begun to wonder how far out I should be taking PT/scans for detecting SCLC. I have had four since LEMS diagnosis in 2018. Thankfully, negative, but I want to stay proactive. Any thoughts?
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Hi @alan-stone, my neurologist told me that he recommended I get a PET (and/or) CT scan for the first two years after being diagnosed. He decided that my LEMS were autoimmune in nature because I have since been diagnosed with a couple of other autoimmune diseases, so I haven’t had a CT in quite a while.
This article may be helpful to you…[Read more]
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Alan Stone started the topic unwanted side effects in the forum Amifampridine (Firdapse and Ruzurgi) 3 years, 5 months ago
I’m an 80 year old male ex-healthy airline pilot. My sleep quality and duration is poor. I’m seeing a sleep specialist and a CBT therapist. No one seems to want to venture an opinion that it could be LEMS or the firdapse. Anyone else having this issue? Been taking 5 mgs melatonin and 6 mgs silenor, (doxepin) since a few years before my LEMS…[Read more]
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Alan Stone became a registered member 3 years, 5 months ago
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Welcome to the Lambert-Eaton News Forums, Alan! We are so happy to have you join us. Take a look around and be sure to read the Using Our Forums post from Kevin Schaefer, our Forums Director here at BioNews. Please introduce yourself in the whichever sub-forum topic fits your needs best when you have a chance.
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