Lambert-Eaton News Forums Forums Diagnosed: What now? How long was it to get your LEMS diagnosis?

  • How long was it to get your LEMS diagnosis?

    Posted by Price Wooldridge on July 6, 2020 at 10:40 am

    I read often how long and difficult it is to get a LEMS diagnosis.  Neuromuscular symptoms seem to overlap between disorders.  In 2009 I had quickly deteriorating muscle weakness at my hips, until I couldn’t walk.  My sister took me to the hospital, where I spent six days, leaving in a wheelchair and with a walker.  They didn’t have a diagnosis for me when I left.  That took 8 more years!  How about you?  Did you get lucky with a quick LEMS diagnosis?

    Price Wooldridge replied 4 years ago 3 Members · 5 Replies
  • 5 Replies
  • Rafael Flores

    Member
    July 7, 2020 at 1:52 pm

    Hello!!! In the case of my son it took almost 2 years to detect LEMS. He lived in Venezuela and was 12 years old (today he is 20 years old and lives in Seville-Spain) we had to travel first to Bogota (Colombia) and then to Barcelona (Spain) where he was finally diagnosed. It was a long and winding road where I had to lead as a parent with a child entering their adolescence with this condition.

  • Price Wooldridge

    Member
    July 7, 2020 at 1:58 pm

    Hola Rafael.  I translate your comment to:

    ”Hello!!! In the case of my son it took almost 2 years to detect LEMS. He lived in Venezuela and was 12 years old (today he is 20 years old and lives in Seville-Spain) we had to travel first to Bogota (Colombia) and then to Barcelona (Spain) where he was finally diagnosed. It was a long and winding road where I had to lead as a parent with a child entering their adolescence with this condition.“

    So glad you got your son a diagnosis., even though it took two years.  So many people have to work hard and travel to get one.  You are a great father to help him find the answer!

  • Anngail Norris

    Member
    July 10, 2020 at 2:29 pm

    After reading about how long it took others to be diagnosed, I feel fortunate that my diagnosis “only” took about 9 months.  I went to 9 different doctors from cardiologists to orthopedic to neurologist. I had stress tests, wore a heart monitor for 2 weeks, had epidurals, MRI tests, and went to physical therapy for almost 4 months because I couldn’t walk or stand up.  All my blood work and tests showed “normal”. I kept telling the doctors this was NOT normal. Since I also have lymphoma, my oncologist tested me for paraneoplastic syndrome.  Finally, thinking I might have POTS, my primary care doctor sent me to a neurology specialist.  The good news was I didn’t have POTS. The other news was that I have LEMS. I finally managed to get Ruzurgi, and once the correct dosage was determined, I got a version of my life back. I can now walk unaided and can stand up for enough time to fold the laundry!  My doctor is a saint.  I am so grateful that he didn’t tell me my symptoms were all in my head.  He actually laughed when I told him about the physical therapy.  The moral of the story is don’t give up.  You know if there is something wrong with your own body.  You have to advocate for yourself.

  • Price Wooldridge

    Member
    July 13, 2020 at 9:54 am

    You are so lucky!  And proof positive that we are our own best advocate.  I’m so glad you didn’t just pull back, and not press for a diagnosis.  And 9 months too!  Wow!  Congratulations.  I hope others will read this story of being proactive.

  • Price Wooldridge

    Member
    July 13, 2020 at 9:54 am

    You are so lucky!  And proof positive that we are our own best advocate.  I’m so glad you didn’t just pull back, and not press for a diagnosis.  And 9 months too!  Wow!  Congratulations.  I hope others will read this story of being proactive.

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