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  • Hi I’m Jenny C. From a small rural town in West Texas

    Posted by jenny-c on August 23, 2020 at 7:56 pm

    I have recently been diagnosed— well I think I have. I tested positive to P/Q Type Antibodies and am awaiting further testing but I have been told I have Lems in August 2020. I have a lot of questions so I hoping to learn from everyone on here. I am a 56 year old non-smoker. I originally went to the doctor for fatigue, weakness and pretty bad double vision that keeps me from reading and driving.
    thanks for letting me be part of the group

    price-wooldridge replied 3 years, 7 months ago 3 Members · 2 Replies
  • 2 Replies
  • Ashley

    Member
    August 24, 2020 at 7:32 am

    Hi @jennyc,

    Welcome to the group, we are glad to have you! I’m happy to answer any questions you have.

    Have you been prescribed anything to help with LEMS yet? The most common medications are Firdapse and Mestonin. Most of us also get immunoglobulin as well. If not, we can talk more about this!

    When do you follow up with your doctor? What other tests do you have scheduled? Have you already had a CT scan or a PET scan? Usually that is one of the first tests you should have after testing positive for P/Q antibodies.

    Look forward to hearing back from you

    Ashley

  • price-wooldridge

    Member
    August 24, 2020 at 8:56 pm

    Hi Jenny! I’m Price, a temporary moderator on the forum. Ashley will help you a lot! She has great knowledge on LEMS. I grew up in West Texas and the Panhandle! Where are you from?

  • jenny-c

    Member
    August 25, 2020 at 7:52 am

    Hi Price! I’m from Albany— small town about an hour northwest of Abilene Texas.

    Ashley-  I have not had any tests yet. They have set me up for the EMG and nerve conduction test on September 28th and a CT scan that day too. They did start me on Mestinon.

    it hasn’t helped any yet but I’ve only been on it a week— not sure how fast it is supposed to help. I’m on 60mg 3x/day.

    My GP said it might Myasthenia Gravis but I did not test positive for any other antibodies so I wasn’t sure about that. Don’t think he knows anything about Lems which is why he set me up an Appt with Dallas Specialist.

    so I’m just waiting. They said no hurry on CT since I’m a nonsmoker.

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