• I’m Back!

    Posted by Ashley on August 3, 2023 at 1:33 pm

    Hey Yall!

    I’m officially back with Lambert-Eaton News!

    Thank you so much @pricewool for all your time, energy and the compassion you brought to the Lambert-Eaton forums! You will certainly be missed! We hope to still catch you on the Zoom meetings when you’re free!

    I have lots to update you all on, and I’d love to hear from you!

    How has everyone been in the last few months?

    Did anyone get to do anything “fun” this summer? 

    I’m sure there are some new members I haven’t “met” yet! I’d like to share my LEMS story with you and look forward to getting to know each and every one of you!

    I was diagnosed with LEMS in 2016. September will be my 7th year anniversary! I can’t believe it’s been so long since I began my LEMS journey.

    If you’d like to read about my LEMS journey, you can check it out here

     

    Ashley replied 10 months, 2 weeks ago 1 Member · 1 Reply
  • 1 Reply
  • Tom sharpe

    Member
    August 7, 2023 at 8:50 am

    Greetings Ashley,

    My name is Tom Sharpe, I was diagnosed in February this year.  I consider myself extremely fortunate to have connected with a neurologist, specializing in neuromuscular disorders.  Having read stories of people with LEMS symptoms, but unable to gain access to the proper health case specialist is extremely scary to me.  I reside in Massachusetts, summertime, and Jupiter, FL winters.  I was seeing doctors at Brighams& Womens / Mass Gen. and was thought to have blocked cardiac arteries.   At that time my symptoms included shortness of breath and fatigue. My arteries were consistent with a 70 year old, not the problem.  While in Florida this past Feb, I was able to schedule an appoint with Gardens Neurology, Dr. Silvers.  He diagnosed me in our first meeting, 45 minutes.

    I am his second LEMS patient.

    After blood test and   EMG, he confirmed LEMS.  Prescribed Firdapse and Mestinon.  I followed the instruction closely, started with 3, 20 mg doses per day with Firdapse and 3 60mg doses of Mestinon.  Now I take 4 doses of 20mg Firdapse (80 per day) and 4 doses of Mestinon (240mg per day).  It works!

    I am now also a patient of Brigam and Womens Mass Gen , (different doctors).  Dr. Amato agreed with Dr Slivers diagnosis.  I plan to continue with both doctors.

    I want to try and help others and I am open to suggestions how to best be of help.

    Tom

     

  • Ashley

    Member
    August 9, 2023 at 8:53 am

    @toms

    Hey! It’s so nice to “meet” you and thank you for sharing your story with me!

    Eventually my fiance and I are planning to move to Florida (probably next year) so maybe we will be neighbors! 🙂

    How are you doing on the mestinon and the Firdapse? Do you feel its comparable to your life before LEMS?

    You mentioned blocked arteries, I’m interested in hearing more about this! You said it wasn’t the problem? Did they end up attributing this to LEMS? I ask because that’s not a symptom I’m familiar being linked with LEMS and if it is something you’ve been told, I’d love to do some independent research on it, and post a topic to share with everyone here!

    Looking forward to hearing from you again Tom!

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