Lambert Eaton Myasthenic Syndrome

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  • #183375
    Lambert Eaton Myasthenic Syndrome

    Good afternoon everyone this is my first post and i do not usually post on any sites, so sorry if it doesn’t read very well. I am just enquiring if anyone has any information or has LMES, i am still in shock and very confused, i had a test for MG back in July they took blood but didn’t think i have nothing to worry about, 2 weeks ago i had a call from the neurology department at Southmead hospital, informing me that one of the blood tests has come back positive for voltage gated calcium channel antibodies? I did the stupid thing and Googled this bad mistake, i now have to have a chest ct scan, and nerve studies all with in the next couple of weeks. Hopefully the blood tests will not take 4 months this time.
    As i have said any advice would be a great help. Thanks Ian :new:

    Browers
    Participant
    Posts: 0
    Joined: 27/11/2019
    #183409
    Reply To: Lambert Eaton Myasthenic Syndrome

    Hi Ian,

    :welcome: to the forum. I have not come across that particular condition before. I will flag it up with HQ and see if there is any info we can share.

    It’s good that you’ve made the step to come on here. Personally, I find writing things down extremely helpful, even if I’m the o my one that reads it. Before appointments as well, I write down questions or stuff I want to bring up. Often I won’t glance at it during a consultation but it’s reassuring it’s down on paper and gives my brain a bit more space for processing!

    Come back to us if you have any worries or questions. We will do our best to help.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #183410
    Reply To: Lambert Eaton Myasthenic Syndrome

    Thank you very much for your reply, i must admit i am still unsure what it is, will be glad when all the tests are done and the results, its not knowing what is going on is causing alot of stress, thanks again all the best Ian

    Browers
    Participant
    Posts: 0
    Joined: 27/11/2019
    #183413
    Reply To: Lambert Eaton Myasthenic Syndrome

    Hi Ian,

    Welcome to the forum, I hope you’ll find reassurance here – even if people don’t have the same condition as yourself, they will have gone through stressful tests and nervy appointments too.

    MDUK doesn’t have any specific information on Lambert Eaton Myasthenic syndrome, but I spoke with our Research team here and they gave me these two links to pass on to you – that way you don’t have to rely on Dr. Google.

    https://www.nhs.uk/conditions/lambert-eaton-myasthenic-syndrome/ or the NORD website: https://rarediseases.org/rare-diseases/lambert-eaton-myasthenic-syndrome/ for more info.

    Best wishes,

    Emma

    Online Manager, MDUK
    Looking to get more involved with the MD community

    Emma Smith-Bodie Emma Smith-Bodie
    Participant
    Posts: 0
    Joined: 30/07/2018
    #183418
    Reply To: Lambert Eaton Myasthenic Syndrome

    Thank you Emma for your reply, i have just read the information you sent, will be glad when all tests are done and i know what i am fighting, got a season ticket at local hospitals at the moment lol.
    This is a very useful aite and although i wish that non of us had any illness its nice to know that people can talk about there illness without being judged
    Thanks again Ian

    Browers
    Participant
    Posts: 0
    Joined: 27/11/2019
    #183467
    Reply To: Lambert Eaton Myasthenic Syndrome

    Do let us know how you get on Ian, we are here to help.

    Thanks
    Emma

    Online Manager, MDUK
    Looking to get more involved with the MD community

    Emma Smith-Bodie Emma Smith-Bodie
    Participant
    Posts: 0
    Joined: 30/07/2018
    #183696
    Reply To: Lambert Eaton Myasthenic Syndrome

    Good morning i hope you don’t mind but i have another question, when everyone went through the worrying part of being diagnosed, did you find how hard it is, was to get information about your illness, all i have been told was my blood could take around another 4 months, been sent to oxford university hospital, asked why they want ct scans, gp or consultant at Southmead hospital wouldn’t give me an answer, i am one of them people who would sooner know what is going on.

    Browers
    Participant
    Posts: 0
    Joined: 27/11/2019
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