Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and swallowing are most frequently affected.

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  • squirrelly23

    New member - Undiagnosed & questions re symptoms

    3
    Good evening, All.Im hoping for some kind replies. I've had mysterious symptoms come and go since the fall of 2014 and no one has figured it out. Not a pleasant place to be as I'm sure many of you know. Initially my neuro mentioned MS, but that no longer appears to be the case. After a period of 7 months or so pretty much symptom-free, things are back. The last episode (fall 2016) brought muscle...
  • tmtapaya

    Pyridostigmine -

    2
    My dad is 95.  He has been taking Pyridostigmine for his MG for the past 10 years.  Recently his doctor told him he can stop taking it.I was not able to talk to the doctor, but I do not understand why he would tell him this.He has NOT stopped taking it. Has anyone else had a doctor tell you to stop taking the medication?ThanksTtapaya
  • MiaG

    Mestinon Question. New to MG... help!!

    4
    Hello! I was finally diagnosed with MG, and I say finally because it took a while, and it's kind of a relief to have a diagnosis that explains so many years of "suffering" in silence.  Now I'm on Mestinon 60mg three times a day.  My doctor didn't really tell me how to space it out, but I'm taking it every 5-6 hours.  HOWEVER, I'm unsure if it's really working.  When I take my dose, I feel a...
  • anomaly895

    Healthy Diet

    2
    After reading some of your posts I'm pretty you all know so its probably a reminder that diet and nutrition can improve your strength such as eating baked and broiled foods instead of fried foods, refraining from a high sugar intake of food as well as drinking plenty of quality water and definitely lots of vegetables.
  • anomaly895

    New member

    6
    look forward to learning from others and sharing my own personal experiences with Myasthenia Gravis.
  • BouncyHead

    Does this sound like your experience with MG?

    1
    Sorry for the length, especially since I'm sure people hate these kind of posts.  I don't usually post on message boards (any type, I'm an introvert even on the web!), but I'm desperate at this point and don't know where to go next for help.  I am very worrried at how most of my symptoms have become dramatically worse over the past month.  Do the symptoms I list below sound like what any of...
  • Gibby74

    I have Myasthenia gravis since December 2016

    3
    i am age 74 male and while in hospital in Jan this year was put on 40 MG prednisone and 60 MG of mestinon 3 times a day which is now upped to 4 times a day. I have slowly getting  worse since Jan 2017 and mostly my breathing is getting worse and lately at times i just about go to ER I am also o Cellcept for about 5 months . I have Emphysema for years however all test show it is stable and that...
  • MYSSANN

    DON'T GIVE UP!

    3
     Hello everyone, I am new to this group but not new to Myasthenia Gravis. I have had this disability for 34 years now. My eyelids were completely closed and I taped them open each morning for twelve years. I am retired due to food poisoning and undergoing five plasmapheresis treatments. I have had my Thymus gland removed, which stopped the disability from advancing without taking steroids. I too...
  • becwithkids

    low potassium

    My potassium levels have been low for 4 months. The infusion center gives me two bags of potassium with my IVIG (I get it in two days, one bag of potassium followed by one bag of IVIG each day).They do a CBC at the beginning of the second day (before they start my infusions of potassium and IVIG). Yesterday, my potassium was at a 2.9 (this is after having an infusion of it the day before)....
  • Rhanson

    Experiences with MG -- a blog

    0
    If you are interested in a young woman's experiences living with MG, this blog is very good.  She posted every day for a year.  It started in 2015.  The blog continues, but to start at the beginning you have to navigate the site backwards by clicking on the date list on the left side of the page.    The main site 'https://365daysofmyasthenia.wordpress.com/The beginning of the daily...
  • ragdoll

    Just diagnosed

    7
    Hello, I was just diagnosed with MG and exploring this new world I will have to deal with.  I hope this is an active forum, as most of the posts I've seen are quite old.
  • Misti78

    Doctor recommendations

    2
    Hi everyone, my mom suffers from myasthenia and she has been having a rough time. I was wondering if anyone could recommend a knowledgeable doctor for MG in or around the Houston, TX area. We are not happy with the lack of knowledge her current neurologist has. I have seen some affiliated with MGFA but they are in Dallas and San Antonio and she is unable to travel. Any help would be greatly...
  • Quen1966

    IVIG denied by my insurance co. HAP

    7
    Hi everyone,  does anyone have any information on how to get IVIG authorized by my health care insurance?  I received a denial from HAP for IVIG infusions which was submitted by my neuro.  I have been taking 20 mg prednisone, 50 mg imuran and mestinon 60-90 mg 4-5 x a day for 4 months and the improvement has been slow and the side effects of the steroids and Mestinon are rough at 90 mg of...
  • joyce2468

    BLOOD PRESSURE PROBLEMS

    3
    Can any one tell me if they have blood pressure problems with MG I have high spikes withmine especially in the mornings.It drops down as soon as I lie down . It can go as high as 200/100 heart rate 102  . thanks in advance for any info about bp problems with MGJoyce x
  • deleted_user

    doctor referral in Houston

    8
    Does anyone know of a doctor in Houston who specializes in MG - I am undiagnosed...have had problems for 4 years....