Bernie replied to the topic Would you switch to taking 100 mg daily of Firdapse? in the forum Amifampridine (Firdapse and Ruzurgi) 1 month ago
I have titrated up to 90mg/day. I take 15mg every four hours, including overnight. I was able to w9ork with my neurologist to obtain the 90mg/day. He is hesitant to increase it further because of the gu8idelines regarding stroke but he might be willing to increase my dosage if the recommendation is increased. I am not sure if it would help me…[Read more]
Bernie replied to the topic Do your LEMS symptoms vary over time? in the forum Living With LEMS 2 months, 4 weeks ago
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.
Bernie replied to the topic Seronegative LEMS in the forum Diagnosed- What now? 3 months, 2 weeks ago
I am negative for all antibodies. My diagnosis was based on SFEMG and symptoms.
Bernie replied to the topic What Can I expect in the forum Using Our Forums 5 months, 1 week ago
Hi Debbie. I, too live in Washington State. I am near Bremerton/Poulsbo. My health provider is Kaiser. They have an excellent diagnostician in Federal Way, he’s the one that diagnosed my case. I started symptoms in January 2021 and am now being treated with Mestinon, Firdapse and Rituxan infusions. I have no indications of Small Cell Lung…[Read more]
Bernie replied to the topic Speaking, Swallowing, and the "LEMS Voice" in the forum Living With LEMS 1 year, 1 month ago
My journey with xerostomia (Dry Mouth).
I first started noticing a sour taste in my mouth around a month before any other LEMS symptoms started making appearing. I was concerned enough that I asked my dentist about it during a routine cleaning, but they could not find any obvious causes. Soon after, I started getting the leaden feeling in my…[Read more]
Bernie replied to the topic Sharing experiences of transitioning from Ruzurgi to Firdapse in the forum Amifampridine (Firdapse and Ruzurgi) 1 year, 3 months ago
I have done the transition. Unfortunately, my other medical issues have clouded my observations of the effects. At the same time, I had some AFIB episodes and was put onto Diltiazem, which most certainly affected my Mestinon/Firdapse. I was wrecked. I called them back and asked for something else and was prescribed Metoprolol. It seems to be l…[Read more]
Bernie replied to the topic Blood pressure medication in the forum General Questions and Topics 1 year, 3 months ago
I was recently diagnosed with AFIB, three trips to the ER so far this year. At first they gave me Diltiazem, which is supposed to also regulate the wayward heartbeat that I now occasionally get. However, it also nullified my Ruzurgi and Mestinon. That was no fun. They replaced that with the Metoprolol, which seems to be a little less intrusive t…[Read more]
Bernie replied to the topic Why I Help Moderate This Forum, My Anniversary Month in the forum General Questions and Topics 1 year, 4 months ago
Price, I was able to convince my neurologist to try time release Mestinon. You have mentioned that you take one 12 hour pill and three 4 hour pills. Would you care to elaborate why you do this instead of taking two 12 hour doses?
Bernie replied to the topic It's Easy When It's Easy, Walking with LEMS in the forum Living With LEMS 1 year, 6 months ago
Price, I purchased my set of poles back before LEMS for some more adventurous hikes I had planned. I found them on Amazon, a pair for about $20. They are aluminum and collapse quite small. I am sure you can do better than REI for pricing.
Any more, I do not leave my house without either the hiking sticks or the cane.
Bernie replied to the topic Sleeping with LEMS in the forum General Questions and Topics 1 year, 6 months ago
I have trouble getting good sleep, but for a different reason. My dysautonomia affects my bladder control so I am now getting up anywhere between 3-7 times a night to void. The good news is that I am able to return to sleep pretty easily most times. The problem is of course that I do not get any more than a couple of hours at a stretch, ever.…[Read more]
Bernie replied to the topic Let's Talk about Lung Nodules Because They're Scary in the forum General Questions and Topics 1 year, 6 months ago
When I began my journey into this autoimmune world, one of my first concerns was a CT scan of my lungs showing what they called “cysts”, which I will assume are the same as what you are calling nodules.
Because of my profession, I have been on a lung monitoring program for decades where I would get an annual chest x-ray. Unfortunately these…[Read more]
Bernie replied to the topic The Efficacy of Firdapse, 3,4-diaminopyridine or 3,4-DAP, In Treating LEMS in the forum Amifampridine (Firdapse and Ruzurgi) 1 year, 7 months ago
Price, do you know if there is a pathway for existing patients to obtain Ruzurgi after the mandate takes effect? It would certainly seem counterproductive to take away one medication from people that really need it. Perhaps this is an FDA question?
I have only had Ruzurgi, but am worried that if I transition my life will become more d…[Read more]
Bernie replied to the topic LEMS Community Zoom Meet and Greet in the forum General Questions and Topics 1 year, 10 months ago
I just joined the community and would like to attend.
Bernie started the topic New chapter in my life in the forum Introductions 1 year, 10 months ago
Hi, my name is Bernie. I recently started a new chapter in my life, that of LEMS. I retired in early 2019 and was living a fairly active life. 2020 came along and was going to be pretty great. Then, in late January my wife was diagnosed with her second round of breast cancer. Shortly after, a pandemic also hit. I spent most of last year taking c…[Read more]
Bernie became a registered member 1 year, 10 months ago
Welcome to the Lambert-Eaton News forums @bernie!
My co-moderator @pricewool and I are so happy you have joined our community!
We have members from all over the world with LEMS and have a ton of information to offer! I would love to hear more about your experience with LEMS! I saw you were diagnosed last month, Lambert-Eaton News…[Read more]