Activity

Hey @pricewool

I’m glad you are also excited to spread awareness this month!!

Hey @pricewool

I’m glad you are also excited to spread awareness this month!!

Thank you Price, yes I did read your article.

@dordem 5 years is a long time to diagnose, but seems to happen frequently due to the rarity of LEMS and the lack of knowledge in the medical community.
@ashleygregory757 and I just guested on a podcast to air soon, and we discussed this very thing giving our LEMS diagnosis story. It took me 8 years, but Ashley was fortunate to get with a good…[Read more]

@dordem Hi Dorothy! Over the years I’ve had several people relate to me their debilitating effects and problems from migraines. Every time I hear stories like yours, I’m so thankful I haven’t had them. I linked an article from an MS patient and her gizmos she’s tried to help her with her migraines. I hope you checked that out.

It took approx. 5 years to get my LEMS diagnosis.  I was diagnosed with spinal stenosis in 2010 and working with physical therapy for that until a couple years later at which time I decided that wasn’t working.  After going through 3 neurologists and 3 years after that, I found the 4th neurologist who gave me the LEMS diagnosis first v…[Read more]

In reference to your article of Jan. 12th related to headaches,  I have been blessed with migraines for several years, each episode lasts approx. 3 months duration and every waking hour of the day.  I always have an aura before hand so I know when they are going to flare for the day.  My aura is always nausea and my eyes have trouble focusing wi…[Read more]

Thanks for your idea to promote Rare Disease Day 2022 all the month of February, @ashleygregory757. Why wait till February 28th right. You’ve inspired me to do a few posts during the month about LEMS and Rare Disease Day. I usually “sneak” a graphic from a Google search to use on my social media posts. I’ve got one now! Let’s make our friends…[Read more]

@bernie Oh sure! I’ve done it both ways. Originally I took one 60 MG Mestinon tablet along with my Firdapse dose every 4 hours during the day.
Later, I began having LEMS weakness problems at night so we added one 180 MG time-release tablet at bedtime to cover this period. I believe it helped.
Since this was working, I got the idea of that…[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!

Hi @maliboogal

Thanks for sharing with us! It’s great to hear you have people you can depend on!