Myasthenia Gravis

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by earn, Apr 28, 2005.

  1. earn

    earn New Member


    I was finally diagosed with Myasthenia Gravis.

    That is in addition to the fibro and rheum,and the other things that go with that.

    After I was hardly able to eat and drink anything, because of the swallowing problem, and after going to 4-5 doctors--all spec---The gastro spec diagosed me. (after 3 trips to him).

    Would someone help me find some support on internet, such as message boards? I desperatly need some information, but most importantly, someone to talk to.

    It is so frightning to choke, and I am afraid to go to sleep. I jumped from a sound sleep this morning, having trouble breathing.

    It affects throat muscles and breathing, making them weak. You have so helpful,even though you are so sick yourselves. Thanks---Earn
  2. ggks

    ggks New Member

    We have a 2 yr old g.grandson that has the ocular kind. Yes, it is very scary to find out what it is and how to get the proper treatment. It took the emergency room here and one doctor in Wichita, Kansas to diagnose him. He is taking Mestinon. This is a very rare disease. Most doctors go their complete life without ever seeing a case. Even the doctors that have seen it before do not see very many cases. Do you know if there is a forum for this?
    ggks
  3. ggks

    ggks New Member

  4. ilovecats94

    ilovecats94 New Member

    I have read that MG is part of Muscular Dystrophy. If you contact the MDA, you may be able to get some help from them. Do a search on MDA and then one for MG and see if there are any message boards for that.

    Good luck!

    Hugs,
    Cat
  5. nightngale

    nightngale New Member

    There is a Forum called Neruo Talk Communitie, just do a google search, it has alot on it. I am being tested for MG now! Because of extreme arm fatigue.
  6. lrgatplay

    lrgatplay New Member

    http://health.groups.yahoo.com/group/bettesmyastheniagravissupport/

    So sorry to hear that you have to deal with this as well as everything else.

    I had this in 1986, following a bout of strep. Finally diagnosed and had my thymus removed in 1989 and slowly recovered mostly.

    The swallowing difficulties came first. Have the most trouble with solid foods like meats, carrots, you get it. Best you can do is chop them really small and mix with something creamy like potatoes or gravy or dressings. And chew alot. You'll also learn to suppress your gag reflex so you can clear the clog without choking. Relax and don't panic. I also couldn't do iced drinks very well. Or drink while eating. Or talk while eating. Had many instances of gagging and asparating. Be very careful. You can get infections that make it even more difficult.
    At night you can sleep propped up or on your left side. This could be tough if your fibro makes you uncomfortable that way.

    I'll be glad to answer any questions you may have, and provided a link to a support site that I know about. I haven't been active there but look in.

    How old are you? I'll check your profile. You may be able to have the surgery.

    Hoping for the best.
    Lisa
  7. doxygirl

    doxygirl New Member

    My sister also has MG!

    It took her almost 15 years to be properly dx!

    During those years she was told it was al MENTAL!

    Long story short..........she was housebound for all of those 15 years.....when finally she got an eye infection that forced her to go out of the houe to an eye specialist.....the "EYE DR" is the one who after 15 years dx my sister!

    She takes medication and is now able to work full time....there is a lot more to her story...and is very sad....but I do know that she went to counseling to help her cope with those 15 years she was MISS dx....and to help her deal with MG!

    I will ask her for more info for you and headline a post here for you so be looking for it k?

    Iam sorry that you are dealing with this on top of dd.....I do believe that the poster that suggested you contact the MG society gave you some very good advice and I do know that they used to even help with medications !

    Hang in there sweetie!:)
    Doxy
  8. lrgatplay

    lrgatplay New Member

    I just realized this is an old post. So for who-ever wants the info, there it is.