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  • Presenting and Publishing

    Posted by Mary Hudak-Collins on August 29, 2021 at 2:33 pm

    Hello everyone…on my most recent visit to my PCP, who was the one who originally saw me when I first presented with my symptoms, informed me that the residents that saw me in the hospital would be presenting my case to the medical students, residents, and physicians of the ETSU (East TN) network. He asked my permission, which of course, I gave. The way he talked sounded as if it would require my assistance in some way but he told me he would talk to me again when they got closer to the presentation. He also told me that following their presentation, they would be submitting it for publication in medical journals.

    So…my question is…has anyone else been involved in this? If so, what all did it entail?

    I’m excited that the docs in my area have recognized their lack of knowledge in LEMS and look forward to helping in any way to educate the healthcare field. I do know that he told me that once he diagnosed me with LEMS, he received a 2 inch high package on information on LEMS. I don’t know who sent it out to him but I will try to find out.

    RDT replied 2 years, 8 months ago 5 Members · 4 Replies
  • 4 Replies
  • Price Wooldridge

    Member
    August 29, 2021 at 3:39 pm

    @mhudakcollins that sound interesting and fun! You will be good representing us.
    I’ve not done what you will do, but I think a few others have.
    In 2009, when I was hospitalized, classes of medical students with their professors, would visit my bedside for a “dog and pony show”. Haha! It was my medical moment of fame.
    Sadly, I was undiagnosed, and left the hospital without one.
    Since then I’ve become educated, as you have. I’ve had numbers of doctors and med students at my bedside through the years (too many ER and hospital stays). I do my best to educate them about my LEMS. They seem eager to learn.
    You’re going to be great!

  • Ashley

    Member
    August 31, 2021 at 7:55 am

    Hey @mhudakcollins

    That’s awesome! Thanks for agreeing to share your case to help educate students, residents, and other physicians!

    I haven’t been involved with anything like that, but I imagine they might ask you to explain your experience with LEMS when they present.

    Keep us posted and let us know how it goes!

  • Joyce Crawford

    Member
    August 31, 2021 at 8:02 pm

    Mary,

    That is wonderful. They will probably be asking a lot of questions, so don’t let it scare you. You know more about this disease than they do, and having a first-hand account is always better than anything from a textbook. Of course, with LEMS, there’s hardly anything in a textbook. Be sure to get plenty of rest before whatever they need you to do, as well as rest a lot afterwards. I have discovered that my adrenaline keeps me going when I am doing something, but then I crash afterwards with exhaustion. Keep us informed on how things go. Joyce Crawford (West Tenn.)

  • RDT

    Member
    September 8, 2021 at 1:08 pm

    My old neuro in VA was supposed to be writing up a case study for publication on my rarer form of lems. But after I developed a severe case of aseptic meningitis from ivig, they stopped.

    all your personal identifiable information will be de-identified for distribution to the masses.

    what a great honor that your case can help others learn from about this rare and intriguing disease.
    Yes, please keep us posted if they ever get to publication.  🙂

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