Bernie

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]

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.

I am negative for all antibodies.  My diagnosis was based on SFEMG and symptoms.

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]

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]

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]

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]

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?

Thanx!

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.

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]

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]

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]

I just joined the community and would like to attend.