Myasthenia Gravis

Discussion in 'Fibromyalgia Main Forum' started by Nikki, Jan 1, 2007.

  1. Nikki

    Nikki Member

    Desperate for information.

    My 12yo granddaughter just got out of the hospital w/this dx.

    I thought this was something that only happened to adults.

    Any help you could offer would be greatly appreciated . . . especially if you or anyone you know was dx'd during childhood.

    Thanks very much!

    Nikki
  2. lrgatplay

    lrgatplay New Member

    So sorry to hear about this in one so young.
    I had this in my mid 20's. Had a thymectomy.

    I found some good tips and information at MedlinePlus, Health Topics.

    Especially the nutrition tips on eating if she has difficulty swallowing. Follow tips to avoid causing upper respiritory infections which makes everything worse.

    Hoping for the best for you and her. You seem to have dealt with more than your share of problems.



  3. u34rb

    u34rb New Member

    nikki,

    Have you checked out hyperbaric oxygen? It could help this condition, particularly if your granddaughter has had, (or will have), surgery.
  4. karinaxx

    karinaxx New Member

    Myasthenia Gravis is one of the many autoimmune diseases.

    Myasthenia gravis: Most often, an acquired disorder that results in fatigable muscle weakness, made worse by activity and improved with rest. It results from an autoimmune attack against the nerve-muscle junction. Other forms of the illness are caused by architectural changes of the nerve-muscle junction.

    here you can find some more information on it http://www.myasthenia.org/
    http://autoimmune.pathology.jhmi.edu/disease_systems.cfm
    http://www.aarda.org/patient_information.php

    Autoimmune diseases are often found in clusters in the family or even in the same person. In your case it seems that the whole family is haunted by different autoimmune d. of the central nervous system.Many docs and researchers believe that FM and CFIDS are also Autoimmune D.
    I would be very carefull with any supplements which enhance the immunesystem and there are diatery recommondations or treatments which help, but i think a specialist in this field will give you a appr. information.It is a very serious condition and therefore i would not advice experimental treatments!

    i hope this will help
    karina
  5. Nikki

    Nikki Member

    everyone for all the information.

    My GD's parents have called in the best specialists there are in Baton Rouge. Her pediatric neuro is top notch. And, if we have any questions (there is an MD case worker that will be working with her) we may call at any time.

    Right now the drs. want her to eat and rest to get her strength back. She will be tutored for the next six wks per drs. instruction. She makes straight A's, so I'm sure she'll do fine.

    (She is actually my Step-GD . . . I forget that..........we don't say step in our family. She and her younger sister (who's 7) were born in our hearts long before my DIL married our son. My oldest son married our best friends daughter.

    Well, I digress.........Thanks so much!

    Hugs,
    Nikki