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    • #16198
      Ashley Gregory
      Moderator

      Hey all!

      I am curious to see how many “young” LEMS patients we have in this group, and at what age you were officially diagnosed with LEMS?

      If your diagnosis took several years, what age did you begin experiencing LEMS related symptoms?

       

    • #16502
      RDT
      Participant

      Diagnosed @ age 40

    • #16534
      Roberta
      Participant

      I was 53.

    • #16535
      Price Wooldridge
      Moderator

      RDT I think that’s fairly early. I hope you got a quick diagnosis.

    • #16536
      Price Wooldridge
      Moderator

      Roberta, I believe 53 is recognized as a typical early age range for LEMS. Because it took about 9 years before my diagnosis, I’m not sure for me. My first autoimmune disorder, DH, started in my late 50’s.

    • #16537
      RDT
      Participant

      @pricewool

      not so bad for me compared to others. I started off with severe dysautonomia symptoms & bad POTs that eventually led to muscle weakness & muscle cramping and eventually LEMS diagnosis.

      For me It took about 1-1.5 yrs before being diagnosed. But again I traveled to many different states and saw many doctors to finally get answers when I wasn’t getting them locally in my hometown. I think that was key for me. Someone on this group I think said they were diagnosed after 8 yrs. that’s so crazy. But happy at least all here received a diagnosis.

    • #16538
      Price Wooldridge
      Moderator

      Yes, I mentioned it took 8 years. But we weren’t actively seeking a diagnosis that whole time. I quickly developed the inability to walk and spent 6 days in the hospital where we did all manor of tests. I got no diagnosis, but rehabbed out of it and went along several years until I started having significant weakness again. We did numerous EMGs, and finally I got sent to the right neurologist, specializing in neuromuscular disorders. Bingo. I got my diagnosis.

    • #16543
      Ashley Gregory
      Moderator

      @rdt

      Thanks for your responses! I was diagnosed at 26, seems like I may be an outlier for the most part. @RDT, I’m glad your diagnosis was “fairly quick” like mine. I hope we can make changes so that others don’t have to wait so long, like Price and many others!

      @bobbi-lynn-berry

    • #16541
      RDT
      Participant

      @pricewool

      wow, what a journey…a true testament to how strong you are and quite the survivor….so glad you’re getting some relief after all these years!!

    • #16554
      Rafael Flores
      Participant

      Mi hijo comenzó con los síntomas a los 13 años. nos llevo casi dos años diagnosticarlo. Actualmente cuenta con 20 años.

      Google translate: My son started symptoms at 13 years old. It took us almost two years to diagnose it. He is currently 20 years old.

    • #16563
      Ashley Gregory
      Moderator

      @rafaelflores

      Wow! I didn’t realize he began having symptoms that young! I’m sure this has been a very hard process for him. I’m glad he got a diagnosis although sad that it took several years, which seems to be the same among us all.

      ¡Wow! ¡No me di cuenta de que empezó a tener síntomas tan jóvenes! Estoy seguro de que este ha sido un proceso muy difícil para él. Me alegro de que haya tenido un diagnóstico aunque triste que haya tomado varios años, lo que parece ser el mismo entre todos nosotros.

    • #16587
      Joanne Evans
      Participant

      I was diagnosed in January 2020 by a neurologist who specializes in neuromuscular symptoms. I had been dealing with issues for 8 years.

      I am now 62.

    • #16588
      Price Wooldridge
      Moderator

      Joanne! So glad you got that diagnosis! 8 to 9 years for me too. About age 68 for me. I remember being so excited.

    • #16590
      Dawn DeBois
      Participant

      Hi everyone! This is a great thread. I’m limiting my screen time with my TBI recovery but wanted to chime in for those who don’t already know…I was diagnosed at the age of 46, 4 years ago this October. Unfortunately, it has been determined I went undiagnosed for most of my life. People thing LEMS is really tough, and it can be; but LEMme Tell Ya, that the fight for a diagnosis is the worst.

    • #16595
      Ashley Gregory
      Moderator

      @joanneevans

      I’m so sorry you also had to wait so long for a diagnosis! I hope we can begin to educate and change this for patients in the future!

    • #16606
      Michele Quier
      Participant

      I am 53 yrs old and it took 3 yrs to be diagnosed with LEMS. It has been a learning curve for me but I still think there is something else wrong in addition to the LEMS. I am on meds now that has taken away the heavy feeling and given me some mobility back but I am still quite limited in what I can do. Steps are the worst and the longer I stand or walk the worse I get. Does everyone else feel this way? curious

       

    • #16607
      Price Wooldridge
      Moderator

      Michelle, glad you got that diagnosis. I’ll just comment about the steps thing. If my LEMS is pretty good I can take a flight of steps with no problem. If my LEMS is bad, I’m literally clinging to the rails and pulling myself up the steps. It changes that much. My only other thought, if your continuing to have significant difficulties on your present treatment plan, I hope you will let your Neuro team know. There are lots of treatment options out there. No miracle cures.

      • #16608
        Michele Quier
        Participant

        Thank you. I know that people look at me crazy when I say there are good days and bad days. I am coping. I just had a follow up apt with neurologist and he basically said to give the meds time and he did not offer any other options. He did ask if I had anything in mind. I guess that made me think that he isnt too informed on what could be tried? I guess I have to keep looking and researching on my own.

    • #16609
      Ashley Gregory
      Moderator

      Hi  @michm7270!

      Sadly, most neurologists are not too well versed with LEMS. Do you know if your neuro has treated a patient with LEMS before?

      As Price mentioned, there are quite a few different treatment options for LEMS. What medications are you currently taking? Have you tried IVIG yet?

      Most of us with rare diseases have learned more about our diseases than our doctors. Although it shouldn’t be this way, you have to be your best advocate. You can always bring print outs of articles to your doctor to share so he/she can also learn more about LEMS. I highly recommend doing this, especially if they haven’t treated someone with LEMS before.

    • #18982
      Tina Sadler
      Participant
      1. I had symptoms at 13. Was diagnosed when when I was 24. LEMs was mentioned in my records at the start, but doctors didn’t test me for it, as they thought I was too young. That was in 1982. I was diagnosed in 1994. I suppose it was rarer back then.
    • #18993
      David1949
      Participant

      I was 64 when I received my diagnosis. I had a stroke in late 2013. My neurologist was concerned that I was having issues with leg weakness afterwards. Testing started in March, 2014 and was diagnosed in August, 2014.  Lucky to have an Autonomic Nervous System Lab nearby.

    • #19014
      Ashley Gregory
      Moderator

      Hey @teenz

      Thanks for sharing with us! I’m sorry you had to wait so long for a diagnosis. What were your first symptoms?

       

      Hey @dpmitnick

      I’m glad your diagnosis didn’t take too long! We are the lucky ones who didn’t have to wait years! I hope one day everyone’s diagnosis can be like ours

      • #19020
        Tina Sadler
        Participant

        Hi. My 1st symptoms were droopy eyelids. Then walking slow. I couldn’t keep up with the kids at school.

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