Viewing 18 reply threads
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    Posts
    • #17611
      Ashley Gregory
      Moderator

      Hey all!

      I know we’ve talked in the past about the ages we were diagnosed with LEMS, but I was wondering what year everyone was actually diagnosed.

      I have a feeling most of us weren’t diagnosed too long ago due to awareness being so low for LEMS.

      I was diagnosed in 2015, What about you?

    • #17640
      Krzysztof
      Participant
      <span lang="en" style="max-height: 999999px;">Hello, I was diagnosed around 2003. In Warsaw, at the medical university in Poland
      Christopher</span>
    • #17641
      Mary
      Participant

      I was Diagnosed December 2020. The blood test came back as low. But my symptoms put me in the hospital 3 wks. Rehab 2 weeks. Im being treating for it with IVIG along with a steroid and Pyridostigmine and i hope it works. I have tube feed because. I got down to 99lbs. What i have read on this forum might be dated but i seem to relate to each. The double vision and swallowing are most challenging. I cant get feedback on double vision. I
      have prisms for reading but cant wear them all the time. Sorry i got carred away

    • #17642
      Krzysztof
      Participant

      Hello. I was diagnosed around 2003. In Warsaw, at the medical university in Poland.

      I tek 60 mg of Firdapse and 180 mg of Pyridostygmine and 35 mg Prednizon

       

    • #17643
      Mary Ann Camporeale
      Participant

      I was diagnosed with LEMS June of 2018.

    • #17644
      Roberta
      Participant

      I was diagnosed in 2008.

    • #17647
      Dorothy Dempsey
      Participant

      I was diagnosed with LEMS in 2014.

    • #17665
      Ashley Gregory
      Moderator

      Hey

      @krzysztoffrompoland

      @marym

      @maclif

      @bobbi-lynn-berry

      @dordem

      I’m so thrilled to see all of your responses! Thank you for sharing with me! I think it’s pretty interesting that so far most of us have been diagnosed in the last 10 years! I believe that LEMS is more common than thought, but misdiagnosed very often or patients are left with an undiagnosed diagnosis. I wonder if LEMS has always been this prevalent or if something in the environment or our genetics are to be blamed for the increase. What do you guys think?

    • #17681
      Joanne Evans
      Participant

      I was diagnosed in January 2020 but had symptoms for 8 years prior. Was forced to leave work early.

      I am thinking our numbers would be much greater because the percentage of cancer and LEMS.

    • #17700
      Ashley Gregory
      Moderator

      Hey

      @joanneevans

      I’m sorry you had such a long time waiting for a diagnosis and that you were forced to leave work. I’m sure that was very hard.

    • #17750
      Ron Lisjack
      Participant

      Started noticing mobility issues around Dec 2018, came back home to work and noticed that I needed to use both railings to climb stairs, so off to the Doctors I went. I was diagnosed in the fall of 2019, after 6 or 7 months of multiple Doctors, MRI’s, EMG’s, X-Rays,

    • #17783
      Ashley Gregory
      Moderator

      Hey

      @ronlisjack

      Thanks for sharing with us! I’m glad you didn’t have to wait terribly long for your diagnosis!

    • #18983
      Tina Sadler
      Participant

      I was diagnosed in January 1994

    • #18985
      Ashley Gregory
      Moderator

      Hey @teenz!

      Thanks for sharing with us!

    • #18992
      David1949
      Participant

      I was diagnosed in 2014.

    • #19015
      Ashley Gregory
      Moderator

      Hey @dpmitnick

      Thanks for sharing!

    • #19025
      Gary Chudd
      Participant

      I think I was about 50 when they finally diagnosed me with LEGS after many misdiagnoses.

    • #19035
      Ashley Gregory
      Moderator

      Hey @gary-chudd

      Thanks for sharing! What were you misdiagnosed with prior to your LEMS?

    • #19062
      Ginny Boynton
      Participant

      I was diagnosed in 2001 after just a few months of noticeable weakness.

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