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  • Advocating for yourself and your LEMS!

    Posted by Ashley on February 26, 2021 at 9:00 am

    Hey all!

    While we have been on the subject of raising awareness for LEMS, I thought it would be important to talk about advocacy for both yourself and other patients!

    Have you been treated poorly by a medical professional because of your diagnosis? If so, how did you handle this?

    Do you feel you are a strong advocate for yourself? What about for others?

    If you do, what things have you done to advocate for yourself or others?

    When I was first diagnosed in 2015, I began spending a lot of my free time researching LEMS. My neurologist had ordered a CT scan to check for malignancies, but my research led me to several articles that stated a PET scan should also be preformed in the first year after diagnosis as well. Turns out, PET scans are more thorough and detect tiny abnormalities that a CT scan could miss. Since LEMs can be caused by a malignancy, a lot of times the diagnosis of LEMS comes before a cancer diagnosis. This is because at the time of diagnosis, the tumor could possibly be too small to detect. So, that’s why researchers suggest we should be closely monitored for the first few years after diagnosis! I contacted my doctor and asked for a PET scan after showing him the studies I found and he obliged. I ended up having a small area of concern in my nasopharynx that I had to have biopsied, but it ended up being inflamed adenoid tissue.

    Recently there was a great article posted by Mary Chapman on Lambert-Eaton Myasthenic Syndrome News about advocacy and things/tools you can use to become a better advocate!

    Ashley replied 3 years ago 3 Members · 4 Replies
  • 4 Replies
  • price-wooldridge

    Member
    February 26, 2021 at 11:43 am

    Probably the most important advice anyone can give to a LEMS patient, be proactive and advocate for yourself. Glad you brought this up.

  • Ashley

    Member
    February 26, 2021 at 1:27 pm

    @pricewool

    Yes, I couldn’t agree more!

  • anngail-norris

    Member
    February 26, 2021 at 3:13 pm

    Being diagnosed with LEMS was indeed an eye-opener for me. I was diagnosed in January of 2020. The previous 10 months had been spent going to 9 different doctors from orthopedic to cardiologist to pulmonary to neurologist trying to figure out what was wrong with me. All lab tests, X-rays, stress tests, etc.  came back as normal. I kept telling the doctors that not being able to walk or stand up was definitely not normal.  My primary doctor finally got me in to see a neurologist who is a POTS specialist. He is the one who finally diagnosed LEMS.
    But the frustration didn’t stop there. I was prescribed Ruzurgi. My pharmacist called to tell me not only could he not get it, but his broker couldn’t get it, and if they could my insurance wouldn’t cover it and it would cost me $8,500 a month. I tried Mestinon, but it did nothing to help me.
    I then called Jacobs Pharmaceutical who connected me with PANTHERx, and they took it from there. They got approval for Ruzurgi from Medicare, from my supplemental insurance, and then connected me with NORD so I could get a grant to pay the balance of the copay.
    None of this would have happened if I hadn’t taken the bull by the horns. Too many people accept what doctors tell them without question and without research concerning their diagnosis. We have to remember that it is called a medical PRACTICE. Since LEMS is so rare, we can’t expect even the best doctors to know about it. I have seen 3 doctors in the past several weeks for other reasons who had no idea what it is.
    So, yes, the biggest revelation I have had through all of this is that you MUST be an advocate for yourself. No one else is as interested in your health as you are.

  • Ashley

    Member
    March 2, 2021 at 9:25 am

    Hey

    @anngailn

    I’m proud of you for being such a strong advocate for yourself! I know it can be hard to do, but sometimes it’s definitely necessary to push for what you and your body need! Great job! I hope your story will inspire others! Thanks for sharing with us! 🙂

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