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  • Aloha! My name is Alan and I am still in the Diagnosis phase…

    Posted by alan on June 2, 2022 at 10:12 pm

    Hello everyone!   My name is Alan and I am new to this forum.  I am seeing a Neurologist currently, but she has no experience with LEMS.  I’ve had my VGCC blood tests with a positive N Type Antibody and a negative P/Q Antibody.  Can someone be diagnosed with LEMS with a negative P/Q?  I have an emg scheduled for July and my Neurologist may refer me to a Neuromuscular Specialist at UCSF.  I am overwhelmed with so much information on the web and would be grateful for any advice and insight you can offer.
    Be Well and thank you!

    Alan

    alan replied 1 year, 9 months ago 3 Members · 4 Replies
  • 4 Replies
  • price-wooldridge

    Member
    June 3, 2022 at 7:42 am

    Alan thanks for introducing yourself. I’ve answered your questions in a separate reply. I can’t recall when I’ve met or spoken with someone from Hawaii who has or may have LEMS. As a kid (eons ago), I loved watching “Hawaii Five-O”! It portrayed the Islands in such an exciting way! Welcome!

    • alan

      Member
      June 8, 2022 at 12:00 pm

      Aloha Price!  We love living in Hawaii.  The weather is awesome and the scenery is breathtaking.  The downside is Healthcare options.  Have a great day!

      Alan E.

  • Alan Stone

    Member
    June 7, 2022 at 4:12 pm

    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 that rare. I finally got a correct diagnosis from U of Miami Medical Research and am on a Firdapse regimen. Looking back, my first symptom was losing athletic coordination. The onset can be insidious, and many neurologists aren’t that knowledgeable. Good luck next month.

    • alan

      Member
      June 8, 2022 at 11:57 am

      Thank you Alan S.  What did your EMG test show?  Can you get a positive LEMS diagnosis with an inconclusive or negative EMG test?  My current Neurologist finally agreed to refer me to the Neuromuscular Clinic at the University of San Francisco.  She’s been kind and patient, but I think she has reached a wall and running out of options on how to proceed with me.  Be well!

      Alan E.

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