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Heather

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@heatherbluephoenixart-com

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    Heather replied to the topic Life with a Mediport in the forum IVIg and Plasmapheresis 3 months, 3 weeks ago

    I have a port – I’m a tough stick and my veins are shot after years of infusions. I get 5 days of ivig every 18 days. I have never had any issues with it, though I have a fabulous infusion team!

    if anyone has questions, I am happy to video what it looks like to access the port when I go in next week. I’m also happy to answer questions.

    heather

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    Heather replied to the topic Seronegative LEMS in the forum Diagnosed- What now? 3 months, 3 weeks ago

    I have a very rare primary immune regulatory disorder in addition to LEMS. Going through all the immunological testing taught me more than I wanted to know about the impact of IVIG on antibodies.  Bottom line is that any tests done with ivig in a person’s system will be  inaccurate-you have to be off ivig for 3 months to get an accurate test. I w…[Read more]

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    Heather replied to the topic Disability Discrimination in the forum Living With LEMS 7 months, 3 weeks ago

    Heavens yes… I will write more later today when I’m able but to be honest the discrimination I’ve experienced this last year has been shocking. I am so grateful that you brought up this topic!

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    Heather started the topic Muscle Jerks? in the forum General Questions and Topics 7 months, 3 weeks ago

    I have LEMS.  My daughter shows signs of it, but hasn’t been diagnosed. We’re both medically complex.

    She’s developed something new – episodes of muscle weakness where she’s almost locked in like a seizure (negative eeg) and rapid fire muscle jerks that are extremely painful.  Has anyone had these symptoms as a part of their LEMS illness?

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    Heather changed their profile picture 7 months, 3 weeks ago

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    Heather replied to the topic Do you have any family history of LEMS? in the forum Diagnosed- What now? 7 months, 3 weeks ago

    My daughter is 14 and showing signs of LEMS. I can’t find any pediatric neurologists who take it seriously tho because she comes up negative on the fractionated antibody tests. I did too – until they finally caught the vgcc antibody once.  Thank goodness for a persistent neurologist!

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    Heather replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 10 months, 3 weeks ago

    That’s today at 2 pacific? If so I would love to join, tho I can only stay on for a few minutes

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    Heather started the topic Driving issues? in the forum Living With LEMS 1 year, 2 months ago

    Im trying to assess the problem I am having with driving and I assume that a few folks might have some insight!!  The muscle weakness in my legs and core is really bad.

    I am getting a fullset of spinet brain MRIs tomorbut it looks like LEMS. My legs are “burned out” as soon as I walk down the hall to my doctor’s office from handclap parking. I…[Read more]

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    Heather replied to the topic Getting a Port for IVIG Immunoglobulin Infusions in the forum IVIg and Plasmapheresis 1 year, 2 months ago

    I’m back to the same question as I am having another flare of LEMS after having it fairly controlled for the last two years.  I also have an immune deficiency so I need to keep that in mind.

    when I have done ivig for LEMS my dose is much higher than for immune deficiency.  I assume that’s the case for others too.  This time my neurologist is cons…[Read more]

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    Heather became a registered member 1 year, 3 months ago

    • Profile picture of Ashley Gregory
      Ashley Gregory replied 1 year, 3 months ago

      Hey Heather!

      Welcome to the Lambert-Eaton News forums @heatherbluephoenixart-com !
      My co-moderator @pricewool and I are so happy you have joined our community!

      We have members from all over the world with LEMS and have a ton of information to offer! I would love to hear more about your experience with LEMS!

      Please take a moment to read the Usin…[Read more]

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